Friday, October 27, 2017

Improving Access to Care Among Formerly Incarcerated Populations with HIV/AIDS under the AIDS Drug Assistance Program

By: Brandon M. Macsata, CEO, ADAP Advocacy Association & Marcus J. Hopkins, HIV/HCV Co-Infection Watch Project Director, Community Access National Network

The ADAP Advocacy Association announced earlier this month that it has launched a new project to improve access to care and treatment for correctional inmates living with HIV/AIDS who are transitioning back into community life. The project – “Improving Access to Care Among Formerly Incarcerated Populations with HIV/AIDS under the AIDS Drug Assistance Program (ADAP)” – aims to raise awareness about issues confronting formerly incarcerated populations living with HIV/AIDS (and/or Hepatitis C) who also access care and treatment (or whom could benefit from such care and treatment) under the AIDS Drug Assistance Program (ADAP), as well as provide useful resources and tools to the communities serving them.

The data on the number of formerly incarcerated populations infected with HIV/AIDS (and/or HCV), in many cases, simply isn’t available. In fact, most states’ epidemiology reports that did report HCV numbers didn’t account for incarcerated populations. What data is available is woefully out of date, using data four years or older. The data on HIV isn’t much better.

The Centers for Disease Control and Prevention (CDC) website, updated on March 14, 2017, cites numbers from 2010 – seven years prior to the most recent update.[1] The data cited is obtained from a 2012 report by the Bureau of Justice Statistics (BJS) – revised in March 2015 – that looked at HIV in prisons and jails from 2001-2010.[2] What used to be an annual report with yearly updates from 1993-2008, has apparently been shelved, over the past decade. Moreover, there doesn’t seem to be much in the way of a replacement from any government agency.

The BJS report indicated a few very important findings:

  • In 2010, there were 20,093 inmates in state and federal prisons infected with HIV, representing 1.5% of the total incarcerated population. 3,913 of those inmates were living with an AIDS diagnosis.
  • Of the total HIV-infected population, 91% were male. African-American (AA) men were 5 times as likely to be diagnosed than White men, and twice as likely as Hispanic/Latino men. AA women were more than twice as likely to be diagnosed with HIV than both White and Hispanic/Latino women.
  • Rates of AIDS-related deaths among state and federal prisoners declined an average of 16% a year from 2001 to 2010, from 24 deaths/100,000 in 2001 to 5/100,000 in 2010.

Other than those numbers, there isn’t a lot of information that is readily available to the public, which is troubling for a number of reasons.
Among them:

  1. HIV remains a deadly disease that, when left untreated and/or undiagnosed, can lead to numerous life-threatening complications and death; 
  2. Incarceration settings are notorious for being hotbeds of transmission for a host of sexually transmitted diseases; and
  3. This failure to present regular data updates may mean that prisons and jails are not complying with regulations requiring that all inmates be screened for HIV.

The CDC does, however, tout support for a number of community-based pilot projects, including Project START, Project Power, a partnership with Emory University (based in Atlanta) focused on juvenile AA girls aged 13-17, and a partnership with Morehouse Medical School to counsel AA male jail inmates about high-risk sexual behaviors and how to reduce them.  These programs are designed to help male and female inmates understand the risk associated with certain behaviors, as well as prevention strategies to be used both within and outside of incarceration settings.

One of the most frustrating aspects of conducting any research is the lack of information available to the public. Disease statistics are the foundation for making good policy at all levels of government, which means that, in order for citizens, legislators, and executives to craft data-driven, meaningful legislation and regulations, these data must be present. The data must be easily accessible, regularly updated (annually), and reliable.  At this point, that data is simply unavailable, which further leads to the need for greater awareness, and clearer guidelines on linkages to care.

What makes this approach vitally important is that access to care and treatment for HIV-infection (and/or HCV) is something that is sorely lacking in the areas that are hardest hit; not just HIV education, really – healthcare literacy in general is an issue. As such, there is a need to work on ways to get people to actually care about their health; help to identify the appropriate linkages to care; and engage in successful care and treatment strategies that will lead them to be Virally Suppressed. 

Available supports and services are going unused in too many ADAP jurisdictions, evidenced by data shared in the 2017 National ADAP Monitoring Project Annual Report (as seen in the charts below).[3] 

There exists a need to raise awareness among key stakeholders – among them, ADAP Directors, community service providers, and state/local advocacy organizations – about existing and emerging issues confronting formerly incarcerated populations. Furthermore, there is a need to model existing best practices to ADAP across the 50 states and territories in the United States. 

To that end, key elements of the project include:

1. Community Forum on Formerly Incarcerated Populations & Provider Friendly Care;
2. Animated Video on Formerly Incarcerated Populations & Linkages to Care;
3. Infographic on Ryan White/ADAP Serving Formerly Incarcerated Populations;
4. White Paper on Model Policy for Ryan White/ADAP Serving Formerly Incarcerated Populations; and
5. Twitter Chat on Ryan White/ADAP Serving Formerly Incarcerated Populations.

The project will execute all of the key elements between September 1, 2017 and March 31, 2018.

To learn more about the ADAP Advocacy Association's Correctional Health Project, please email info@adapadvocacyassociation.org.

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[1]  Centers for Disease Control and Prevention (CDC). (2017, March 14). HIV Among Incarcerated Populations. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for HIV/AIDS, Viral Hepatitis, Sexually Transmitted Diseases, and Tuberculosis Prevention: Division of HIV/AIDS Prevention. Retrieved from: https://www.cdc.gov/hiv/group/correctional.html
[2] Bureau of Justice Statistics. (2012, September 13). HIV in Prisons, 2001-2010 (NCJ 238877). Washington, DC: United States Department of Justice: Office of Justice Programs: Bureau of Justice Statistics. Retrieved from: https://www.bjs.gov/content/pub/pdf/hivp10.pdf
[3] National Alliance of State & Territorial AIDS Directors (2017, May 18); 2017 National ADAP Monitoring Project Annual Report; p. 24. Retrieved from http://www.nastad.org/sites/default/files/2017-national-adap-monitoring-project-annual-report.pdf



Thursday, October 12, 2017

Ins and Outs of the Successful Medicare Part D Program

By: Jennifer W. Cline, Advocacy & Strategic Alliances, PhRMA

****Reprinted with permission****

Medicare is the federal government program that insures many of America’s retirees and people with disabilities. Medicare Part D was implemented in 2006 to provide affordable prescription drug coverage to seniors and people living with disabilities. There are many parts to this very successful program.

Today, more than 40 million Medicare beneficiaries in the United States benefit from this program. In 2017, there are, on average, 22 Part D plan choices available in every region across the country.[i] This allows beneficiaries to choose a plan that best meets their individual coverage and financial needs and, in turn, they are better able to adhere to prescribed treatment regimens.

As we enter the fall and open enrollment season, it is important to keep Medicare Part D protected, so it can continue to serve the vulnerable American populations who need it most.

Did You Know Medicare Part D offers financial assistance to those who qualify under the “Extra Help” or “Low Income Subsidy (LIS)” Program?
  • The program helps about 11.5 million low-income Part D beneficiaries by waiving or lowering their premiums and deductible, and reducing their cost sharing for individual prescriptions.
  • On average, LIS beneficiaries are in poorer health than non-LIS patients.[ii] LIS beneficiaries often have multiple conditions or diseases and are more likely to be disabled than beneficiaries overall.[iii] Additionally, the overall disease burden is greater for LIS enrollees than non-LIS enrollees across multiple disease categories, including diabetes, chronic heart failure, chronic kidney disease and COPD.[iv]
  • Unfortunately, harmful changes to this important aspect of the Part D program have been proposed, including increasing copays for brand medicines used by beneficiaries who receive Extra Help.
  • Proponents of this idea say it is intended to increase use of generic medicines, however even MedPAC has noted that generic drug use among Part D enrollees – including beneficiaries receiving Extra Help – is already high. In fact, according to MedPAC, in 2014 83 percent of prescriptions filled by beneficiaries receiving Extra Help were for generics.[v]
  • Higher copays for Extra Help beneficiaries could also limit patient and provider choice, forcing changes in prescribed treatment even if it is not medically appropriate. In many therapeutic classes, substitution between a brand name drug and a chemically different generic is not medically appropriate. Policies that put patients at risk by forcing them to take a medicine other than the one their physician prescribes may do more harm than good by reducing adherence, which could in turn lead to poor health outcomes and increase total health care spending.
Did you know that negotiations already happen in the Part D program, helping reduce overall costs?
  • Part D is a competitive private market, rather than a system with government-set pricing. Private Part D plans negotiate substantial discounts and rebates with drug manufacturers, without the government meddling. According to a recent study, these substantial rebates have resulted in an average 35.3 percent discount from manufacturer list prices across 12 widely used therapeutic areas in Part D.[vi]
  • The Medicare Trustees have also repeatedly said negotiated discounts and rebates are substantial and continue to grow. In fact, the 2017 report shows rebate levels increased to 18.2 percent in 2015.[vii] There is broad agreement the Secretary of HHS could not negotiate lower prices. The Congressional Budget Office (CBO) has repeatedly found that “the Secretary would be unable to negotiate prices across the broad range of covered Part D drugs that are more favorable than those obtained by [Prescription Drug Plans (PDPs)] under current law.”[viii] And the Office of the Actuary at the Centers for Medicare & Medicaid Services (CMS) has come to the same conclusion.
Did you know that Part D’s competitive structure has kept costs affordable and beneficiary satisfaction rates high?
  • Medicare beneficiaries have enjoyed relatively stable monthly Part D premiums. CMS estimates that the average monthly Part D premium for 2018 will decrease to $33.50 – roughly a dollar less than the average monthly premium in 2017.[ix]
  • Part D costs are $349 billion (or 45 percent) less than initial 10-year projections, and Part D made up just 13.7 percent of total Medicare spending in 2016.[x]
  • 87 percent of Part D prescriptions are generic[xi] (up from about 50 percent before the program was implemented)[xii], keeping costs low.
  • Multiple studies have shown about 9 in 10 Medicare beneficiaries are satisfied with their Part D coverage.[xiii]
And did you know that the affordable access provided by Part D helps improve beneficiaries’ overall health and reduces the use of other costly and avoidable health care services?
  • A recent study found, since 2006, nearly 200,000 Medicare beneficiaries have lived at least one year longer, with an average increase in longevity of 3.3 years. On average, 22,100 lives were saved each year between 2006 and 2014, primarily from fewer deaths from medication-sensitive conditions like diabetes and cardiovascular disease.[xiv]
  • A study in the National Bureau of Economic Research reported gaining Medicare Part D coverage was linked to an 8 percent decrease in hospital admissions for seniors.[xv] Gaining coverage also helped improve treatment adherence for enrollees with congestive heart failure, leading to more than $2.3 billion in annual Medicare savings.[xvi]
Medicare Part D helps retirees and people with disabilities live longer, healthier lives and is a vital component of our nation’s health care system.  Serving people who need it most, Part D must be protected and strengthened in the years to come.


Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.


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[i] Kaiser Family Foundation, “Medicare Part D: A First Look at Prescription Drug Plans in 2017,” October 2016. http://kff.org/report-section/medicare-part-d-a-first-look-at-prescription-drug-plans-in-2017-findings/
[ii] Medicare Payment Advisory Commission, “Report to Congress: Medicare Payment Policy,” March 2012.
[iii] Ibid. 
[iv] Stuart BC, et al. University of Maryland and PhRMA Chartbook: Medication Utilization Patterns and Outcomes Among Medicare Part D Enrollees with Common Chronic Conditions. September 2014. p. 16-17. https://www.pharmacy.umaryland.edu/media/SOP/wwwpharmacyumarylandedu/centers/lamy/pdf/Part_D_Chartbook_Final_2014.pdf.; BC Stuart et al. Why Do Low-Income Subsidy (LIS) Recipients Have Higher Part D Drug Spending? Poster presentation at AcademyHealth Annual Research Meeting, June 2014 San Diego. 
[v] Medicare Payment Advisory Commission, “Report to Congress: Medicare Payment Policy” March 2017, p. 410. 
[vi] QuintilesIMS Institute, “Estimate of Medicare Part D Costs After Accounting for Manufacturer Rebates,” October 2016. http://www.imshealth.com/files/web/IMSH%20Institute/Reports/IIHI_Estimate_of_Medicare_Part_D_Costs.pdf
[vii] https://www.cms.gov/Newsroom/MediaReleaseDatabase/Press-releases/2007-Press-releases-items/2007-01-11.html
[viii] Remarks of CBO Director Dr. Douglas Elmendorf before the Senate Finance Committee, February 25, 2009 https://www.finance.senate.gov/imo/media/doc/62182.pdf
[ix] CMS press release, “Medicare Issues Projected Drug Premiums for 2018,” August 2, 2017.
[x] See CBO Medicare Baselines available at www.cbo.gov
[xi] Medicare Trustees. The 2017 annual report of the Boards of Trustees of the Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds. July 2017:143(footnote 66).
[xii] Pharmaceutical Research and Manufacturers of America analysis based on IMS Health, Vector One®: National Audit data. Data extracted September 21, 2012.
[xiii] Morning Consult Survey for Medicare Today, “Nearly Nine in10 Seniors Satisfied with Medicare Part D,” July 2016; MedPAC, Report to Congress: Medicare Payment Policy, March 2013, p. 345.
[xiv] Semilla, et al., “Reductions in Mortality Among Medicare Beneficiaries Following the Implementation of Medicare Part D,” The American Journal of Managed Care, Vol. 21, No. 9, Sup., July 2015.
[xv] Kaestner R, Long C, Alexander C. Effects of prescription drug insurance on hospitalization and mortality: evidence from Medicare Part D. The National Bureau of Economic Research. http://www.nber.org/papers/w19948. Published February 2014.
[xvi] Dall et al., “The Economic Impact of Medicare Part D on Congestive Heart Failure,” The American Journal of Managed Care, May 2013.

Thursday, October 5, 2017

The Healthcare We’ve Been Waiting For?

By: Sue Saltmarsh, Executive Director, Demand Universal Healthcare

On September 13th, U.S. Senator Bernie Sanders (I-VT) stood surrounded by a number of his Senate colleagues to unveil the Medicare for All Act, or the Universal Medicare Program as it’s called in Title I, S. 1804. Never mind that most of those Democrats had fallen all over themselves to surf the wave of the people’s vociferous demand for single-payer healthcare instead of getting wiped out by it. But the purpose of this blog is to examine and assess the actual legislation, so on to it.

Simple facts first – if you are an H.R. 676 (the Expanded & Improved Medicare for All Act) purist, you will not be satisfied with this bill. If you are an Affordable Care Act (ACA) apologist, you should like it since it addresses most of the abject failures and hard lessons of the ACA. And if you’re living with a chronic, sometimes fatal disease, terrified of losing your Medicaid or unaffordable ACA insurance, not to mention having to deal with worsening illness as medications become harder to come by if you haven’t won the lottery lately, the text of the bill will give you renewed hope that you might actually live long enough to see the end of Trump!

The bill is NOT perfect, but it is a long way ahead of Clintonesque incrementalism and far closer to the gold standard of H.R. 676 than any Senate Democratic effort to date. There is cautious optimism within the single-payer activism community. We’ve seen what the legislative process can do to a good bill and won’t breathe easy until it’s not just passed, but implemented, but we are, to varying degrees, behind it.

Photo Source: inquisitr.com

What it does

Let’s start with what it achieves. “Every individual who is a resident of the United States is entitled to benefits for health care services under this Act.” Note “residents,” not “citizens” (though the Secretary of the U.S. Department of Health & Human Services (HHS) has the power to determine the meaning of “resident”). Of course, Republicans will blast this with a “they take our jobs; now they’ll take our health care!” argument, one we should not be polite about debunking. And we should be prepared for losing it if by changing to “citizens” we get the Republican votes to pass it. Remember, if we do our jobs in 2018, there will be a Democratic Senate and amendments can be made.

Like H.R. 676, it also includes in Section 201 its list of benefits which are more comprehensive than the ACA, including dental, vision, and hearing. It also states in Sec 201(a)(4), “Prescription drugs, medical devices, biological products, including outpatient prescription drugs, medical devices, and biological products.” More about this later.

Specific language protecting reproductive rights, both in the non-discrimination Section 104 and the Sec. 201(a) list of benefits-- “RESTRICTIONS SHALL NOT APPLY. Any other provision of law in effect on the date of enactment of this Act restricting the use of Federal funds for any reproductive health service shall not apply.” Further, the bill would forbid discriminating against an eligible provider on the grounds that they provides abortion. This may set off a Republican push to refocus repeal efforts on Roe v. Wade, but I say it’s well past time for progressives to reach out to Libertarians and join forces to put our collective foot down and say, “NO MORE!” to the anti-choice zealots! Why have we allowed them to dictate their ideological public policy over established law anyway? Another issue we can’t afford to be courteous about.

Speaking of choice, S. 1804, like H.R. 676, will give us the freedom to choose our doctors, other providers, and facilities with no concern about networks or referrals that need “prior approval.” That truly is choice, contrary to the mythical choice Republicans have claimed their draconian repeal-and-replace efforts would include.

Another major single-payer goal is included in the provision that the system will be publicly funded through a variety of options, including a modest tax increase and the elimination of “escape hatches” for the wealthy and corporations to avoid paying anywhere near their fair share. This will be done via the establishment of the Universal Medicare Trust Fund where money from now obsolete healthcare programs (Medicare, the Federal Employees Health Benefit Program, TRICARE, etc.), the tax increases, fees, gifts, and bequests will be deposited and expenses paid.

For the howlers who accuse Bernie of handing out herds of fantasy “ponies” with no plan on how to pay for them, all they have to do is read his 5-page paper Options to Finance Medicare for All (available at https://www.sanders.senate.gov/download/options-to-finance-medicare-for-all) to see that he has thought, researched, and consulted about how to finance his plan and found many ways to do it fairly, though politicians of either party won’t like it because it will require them to pay more while we worthless, lazy “takers” out here will finally catch a break.

For those who worry about the current employees of the insurance industry, first, insurance will still exist so not all jobs will be lost. Then Section 601(4) provides 1% of the entire healthcare budget for up to five years from when benefits become available for programs “providing assistance to workers who perform functions in the health insurance system and who may experience economic dislocation as a result of the implementation of the Act.”

A few other goodies:

  • Section 802 provides for repeal of COBRA continuation coverage requirements under ERISA
  • Continuity of care is a priority in every section dealing with actual care, treatment, benefits during transition, etc.
  • Section 901(2) provides that no reevaluation of the Indian Health Service shall be done without consultation with tribal leaders and stakeholders
  • Section 1014 eliminates the 24-month waiting period for Medicare coverage for disabled individuals. 

Photo Source: Gerald Friedman 

What it doesn’t do

There are several major problems with the bill, the first of which is that long-term care is not covered under S. 1804 like it is in H.R. 676. Here, it would be covered by Medicaid, thus keeping Medicaid operating instead of returning the money spent there to the healthcare trust, as well as perpetuating the trap of people, especially families, having to live in poverty in order to qualify for Medicaid. This will be one provision that activists will focus on.

The contradiction of prescription drugs being covered as per the list of benefits is confusing when, in Section 202 “No Cost-Sharing,” there’s an exception for which “the Secretary may set a cost-sharing schedule for prescription drugs and biological products, provided that (i) such schedule is evidence-based and encourages the use of generic drugs; (ii) such cost-sharing does not apply to preventative drugs; and (iii) such cost-sharing does not exceed $200 annually per individual adjusted annually for inflation.”

Much is being made of drugs not being covered, but perhaps we should take a breath and put some hope in that little word “may” – the Secretary may set a cost-sharing schedule…but he or she doesn’t have to. Of course one like Price would, but once again, if we elect a president with a progressive agenda, his or her Cabinet would be less likely to include a Secretary of Health & Human Services who would want to bring back cost-sharing.

It also allows for investor-owned, profit-driven facilities such as MRI and imaging clinics, labs, and rehab facilities to continue to operate and to increase profits for their investors by raising prices, performing unnecessary and/or excessive testing and procedures, and generally propping up the idea of healthcare as a commodity.

Perhaps worst of all, considering what we’ve learned with the ACA, is the four-year time period set for full implementation. Historically, both here with Medicare and abroad with different countries’ universal systems, implementation has been done all at once without today’s technology (within a year usually). Phasing it in over four years only eats up cost savings we’ll need to help fund it, as well as preventing early proof of efficacy. It also provides time for things to go wrong or to be sabotaged, giving the long knives of the opposition’s propaganda an opportunity to carve it up as they have the ACA.

Pages 65 through 95 are devoted to the transition period between passage of the law and full implementation. The Medicare buy-in concept is proposed as the appropriate way to shift from the mess we have now to the Universal Medicare Program – acronym UMP which is exactly what we’ll need to get through the “game” of this extra four years of complication. I don’t know what exactly Bernie’s strategy was in devising this, but I do trust that he has one and knowing him, it involves foresight, a rare and exotic asset in a politician, but one he has boatloads of.

Conclusion

I don’t know that I and Demand Universal Healthcare have reached a final conclusion on S. 1804. We, too, are cautiously optimistic and it’s easy to see the immediate relief and hope this would bring to the millions of people who right now are desperately trying to stay alive and well despite what feels like a deliberatively punitive obstacle course of barriers set up by people who have not yet been in the shoes of the sick or the impoverished.

For the HIV/AIDS community, this could bring a whole new color to the tapestry of living with HIV and all that comes with it, physically, mentally, emotionally, financially, and socially. The lofty goals of the National Strategy could finally be realized as “test and treat” became the normal, easy course of events. The great work of the ADAP Advocacy Association could continue in efforts to make access to all drugs, brand names included, a priority as more new drugs come down the pipeline and generics become ineffective compared to the new ones.

I have always been a realist. I never wanted a pony and I don’t now. The Right is offering us a dark horse that will eat everything in sight and then kick down the barn and I’m certainly not buying that. Bernie isn’t Merlin and yet he holds at least this idea that could become magic. And I’m willing to work to see that it gets a chance.


Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Thursday, September 14, 2017

Kaiser Family Foundation Publishes Fact Sheet on AIDS Drug Assistance Programs (ADAPs)

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The Kaiser Family Foundation (KFF) recently published an excellent Fact Sheet on the AIDS Drug Assistance Programs (ADAPs), which are authorized under the Ryan White CARE Act. ADAP provides medications for the treatment of HIV disease for people who are uninsured, or under-insured. The ADAP Advocacy Association commends KFF for making this important educational tool available.

Download the KFF Fact Sheet.

The KFF Fact Sheet is broad, in that it provides relevant background information about ADAP, as well as budgetary summaries, drug formularies, and program expenditure breakdowns. It also highlights information on eligibility requirements, client demographical data, cost containment measures, drug purchasing models, and pertinent information related to Medicare Part D. It serves as a useful tool, especially for advocates trying to educate lawmakers at the federal, state, and local levels.

Did you know that ADAPs are not entitlement program?[1]

Did you know that State funding only accounted for 6% of the overall ADAP budget?[2]

Did you know that the average amount spent on drug purchases and co-payments was $8,663?[3]

Did you know that 257,396 people were enrolled in ADAPs in CY 2015, ranging from 140 in Wyoming to more than 35,000 in California?[4]

Did you know that not all State ADAPs received rebates from drug companies?[5]

These interesting facts, along with others can be viewed online at http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.

Profile of ADAP Clients, 2015.
Source: Kaiser Family Foundation




















The National Alliance of State & Territorial AIDS Directors (NASTAD) released its 2017 National ADAP Monitoring Project Annual Report earlier this year, which tracked state-by-state programmatic changes, emerging trends, and latest available data on the number of clients served, expenditures on prescription drugs, among other things. The Fact Sheet on the AIDS Drug Assistance Programs (ADAPs) published by KFF certainly complements the comprehensive analysis done by NASTAD on the program, annually.

Of particular interest to the ADAP Advocacy Association  as well as many ADAP stakeholders  is the overview on the drug formularies provided in the KFF Fact Sheet. These drug formularies are the foundation by which states mold their strategies to promote access to care and treatment. According to the KFF Fact Sheet, some key points of interest include:[6]
  • Six (6) states had an open formulary
  • All states offered all of the drugs identified in the “recommended regimens” in the nation’s HIV treatment guidelines.
  • Of the 45 ARVs currently available (including multi-class combination products and generics), ADAP formularies covered between a low of 37 drugs in Arkansas to all 45 in 27 states.
  • In addition to ARVs, many ADAPs provide access to drugs to treat opportunistic infections and HIV co-infection (e.g. treatment for hepatitis).
The importance of state drug formularies cannot be understated!

Dating back to the inception of this organization ten years ago, we have routinely sounded a cautionary alarm that the ADAP waiting lists (which were officially eliminated several years ago) are only the “tip-of-the-iceberg” because other cost containment measures restrict access to care and treatment. Among them, restrictive drug formularies. By limiting the treatment regiments available to people living with HIV/AIDS, states are indeed restricting access to care and treatment. These restrictions can also impact treating other chronic conditions associated with the disease, such as lipodystrophy or diarrhea.

Concerns over restricted state drug formularies was charactered as follows by Eddie Hamilton, Founder of the ADAP Educational Initiative: "The increased cost or additional effort of restricted formularies are a barrier for ADAP clients and may cause them to abandon the prescription which their doctor has written for a medically necessary reason. Many of the excluded medications are to combat side effects and co-morbidities caused by the primary antiretroviral regimens. These restrictions will continue to compromise their health and will lead to costly complications such as hospitalizations, lower medication adherence and overall higher healthcare costs."

To be fair, State ADAPs are often forced to face the harsh reality of prioritizing limited resources, especially since not all of them receive state matching funds or pharmaceutical rebate dollars. Also to NASTAD's credit, they make available another great resource, specific to ADAP drug formularies. Download the 2016 ADAP Formulary Database.

To learn more about the KFF Fact Sheet on AIDS Drug Assistance Programs, or other HIV-specific information and resources offered by the Kaiser Family Foundation, visit http://www.kff.org/graphics/hivaids/.
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[1] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[2] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[3] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[4] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[5] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.
[6] Kaiser Family Foundation (2017, August 16); AIDS Drug Assistance Programs (ADAPs); HIV/AIDS. Retrieved from http://www.kff.org/hivaids/fact-sheet/aids-drug-assistance-programs/.

Thursday, September 7, 2017

National Standards of Care for TGIQ Health

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Earlier this year, several important resources were made available by the ADAP Advocacy Association to promote better access to care for transgender men & women living with HIV/AIDS. One of the collaborative partners in that effort was RAD Remedy, which connects trans, gender non-conforming, intersex, and queer folks to accurate, safe, respectful, and comprehensive care in order to improve individual and community health. Now, RAD Remedy has published a "uniquely grassroots" document to establish clear guidelines for providers serving these underserved communities.

The National Standards of Care for TGIQ Health includes community-driven best practices for providers to meet and can be used by patients and providers alike to advocate for improvements in forms, systems, and practices. Branded as a "community-driven understanding of competent care for trans, gender non-conforming, intersex, and queer individuals," it lays down the groundwork to provide culturally and linguistically appropriate services (CLAS).

National Standards of Care for TGIQ Health
National Standards of Care for TGIQ Health
In these groundbreaking standards, RAD Remedy puts the CLAS standards in action by outlining key components of culturally competent care and treatment for trans, gender non-conforming, intersex, and queer individuals. They encompass regulatory actions, paperwork, office practices, human resources, marketing, and community engagement.[1]

Upon releasing the new national standards, Riley Johnson, RAD Remedy's executive director, summarized: "This uniquely grassroots document is an open opportunity for providers and hospital systems nationwide to become a positive presence in the lives of TGIQ folks. We look forward to honing forms, systems, and practices which directly impact the health and welfare of our communities."

This is not the first initiative by RAD Remedy to address the significant health disparities and care barriers faced by these communities. In June 2015, RAD Remedy launched the Referral Aggregator Database, a review and referral database that, for the first time, empowered TGIQ people to share reviews and experiences, providing comprehensive information to the community and feedback for providers. The database now has over 4000 providers nationwide and sees an average of 6000 unique visitors per month.

Download the National Standards of Care for TGIQ Health.

For more information, please visit RAD Remedy at RADremedy.org or email at info@radremedy.org.

Related resources:

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[1] Colin, E., Hennessy, R,, Johnson, R., Lowden, R., and Sloane, S; (2017) National Standards of Care for TGIQ Health; RAD Remedy. Retrieved from http://static.radremedy.org/guides/RAD-Remedy-2017-Standards-of-Care-Color.pdf.
[2] Johnson, R.; (2017, August 28) National Standards of Care for TGIQ Health to Help Providers Improve Services; RAD Remedy.


Friday, August 18, 2017

Health Caring Post-Charlottesville?

By: Mike Magee, M.D., Health Commentary

Photo of Dr. Mike Magee
Dr. Mike Magee
Collectively health professionals have a unique role in American society. Across cities and counties, rural and urban, we are asked to be available and accessible to help keep people well and respond when they are sick or injured. Those wounds come in all shapes and sizes – wounds to the body, wounds to the mind, wounds to the spirit. As important as are our diagnostic and therapeutic interventions to society, they pale in comparison to a larger, often over-looked function. Together, collectively, we process day to day, hour to hour, the fears and worries of our people, and in performing this function, create a more stable, more secure, more accepting and more loving nation.

With Charlottesville etched in the American psyche, good-willed Americans are in search of our true center. As a physician, I recall patients whose goodness and courage and kindness brought out the best in me and my colleagues. That after all is the true privilege and reward for doctors and nurses and all health professionals – the right to care.

Nearly six years ago, my wife and I were blessed with the arrival of our eighth and ninth grandchildren – two little girls, Charlotte and Luca. We were also introduced, for the first time as health consumers, to the Neonatal Intensive Care Unit (NICU). The girls came early, at 34 weeks, and struggled to work their way back up to their due date. They are doing great today, but in those early days, it wasn’t easy on them or their parents or the care teams committed to their well being.
Viewing them from my grandparent perch, the Connecticut Children’s Hospital Center NICU team at Hartford Hospital did a great job, balancing high tech with high touch, providing wisdom and reassurance, inclusion and training to the girls’ parents, who were inclusively inducted as part of the team on day one. Viewing it all from my vantage point as a former surgeon, hospital administrator and health policy analyst, I was impressed, but not surprised.

When people claim that “America has the best health care,” they’re usually referencing groups of highly skilled doctors and nurses and other caring professionals, committed to their patients and to each other, armed with experience, judgment and technology to – collectively – heal and provide health, and keep us whole in the process. It’s really a holy thing to observe.

What that NICU experience illustrates is that we health professionals are fully capable of collaborative and humanistic care, especially when faced with a complex crisis. But the challenge today, in the face of purposeful Presidential segregation of our citizenry, is to extend the same blend of knowledge, skill, compassion and partnership to all patients on a day-to-day basis. How do we assist them in creating healthy homes, healthy families and healthy communities?

If you deconstruct the success factors embedded in our NICU experience, what do you find, independent of the scientific skills, sophisticated technology and ultra-focus on the patient?

There are three elements that are worthy of note.

  1. Inclusion: For most humans, the first instinct when faced with trauma or threat is flight. And yet, these NICU professionals’ first instinct was inclusion. With IVs running, and still groggy from her C-section, our daughter and her husband were wheeled to the NICU and introduced to their 3 lb. daughters. They were shown how to wash their hands carefully, how to hold the babies safely and without fear, and – while given no guarantees – experienced the transfer of confidence from the loving and capable caring professionals to them. Those were remarkable first day gifts to this young couple.
  2. Knowledge: Coincident with the compassionate introduction to their daughters, there was a seamless transfer of information – each of their daughter’s current conditions, an explanation of the machines and their purposes, the potential threats that were being actively managed, and the likely chance of an excellent outcome. This knowledge – clear, concise, unvarnished, understandable – delivered softly, calmly, and compassionately, reinforced these young and fearful parents’ confidence and trust in each other, and in their care team, on whose performance their newborn daughters’ lives now depended.
  3. Accessibility: Clearly a NICU is a 24/7 operation. But that alone did not assure that the needs of these patients and their family would be met. First, members of their care team needed to demonstrate “presence.” By this I mean, by communication, touch, voice, and face, they needed to connect to the parents, to signal that they cared for these unique individuals. The outreach needed to be “personal.” This was not a rote exercise for them, not just another set of parents, not just another set of tiny babies. These were these specific parents’ precious children, their lives, their futures were now in the balance. And the performance needed to be “professional.” The team needed to be consistent and collaborative, with systems and processes in place, no descent and little variability in performance, rapid response, anticipatory diagnostics and confident timely management of issues as they arose.

As we recover as a nation from Charlottesville and Trump’s self-inflicted wounds, we caring health professionals need to mirror a better way – holistic and inclusive, humanistic and scientific, where goodness and fairness reside side-by-side. How might each of us actively demonstrate a commitment to inclusion, knowledge transfer and accessibility, and in doing so, assure that our patients respond with confidence and trust in America?

**Reprinted with permission

Read Dr. Mike Magee's blog online, "POST-CHARLOTTESVILLE – WE NEED CARING HEALTH PROFESSIONALS MORE THAN EVER!"


Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Friday, August 11, 2017

Drug Importation Policy is a Hard Pill to Swallow

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

When I first heard the news that Congress was considering legislation that would allow prescription drugs to be imported from abroad, I was honestly quite shocked. I know firsthand how such policy can negatively impact consumers who decide to purchase drugs from abroad. The potential consequences are quite daunting.

In 2002 (just shy of my 30th birthday), I was diagnosed with HIV. When my doctor told me the news, a hundred questions came to mind all at once. What was my long-term prognosis? What types of medications would I have to take? Who could I turn to with my questions about life with HIV?


(Editor's Note: The photo of me was taken in 2002 on Easter Sunday during the time that I was importing my HIV medications. At the time, I was still quite sick after experiencing my acute seroconversion. In fact, in this photo my two best friends are literally helping me stand up, and they made me look "presentable" with some make-up. The benefits of rooming with two wonderful women who took care of me.)

What happened next directly shaped my viewpoint of the dangers associated with importation.

I ordered medications from an online Canadian pharmacy. To this day, I have no way of knowing where the drugs were made or if they contained the active ingredients I needed to effectively treat my condition.

At the time, I opted not to consult my physician in the process. Due to my insurance coverage, my out-of-pocket cost was $1,300 during the second month of treatment. For two months, I received medications via mail from Canada. Honestly, I didn’t even entertain the idea of whether the medicines were real or fake.

Fortunately, my doctor intervened and advised me of the reality of what I was doing. She told me that drugs purchased through online channels are often counterfeit and most likely do not contain any ingredients that help patients. In many cases, the ingredients can be deadly. Without even knowing it, I was rolling the dice with my health and safety. It was an eye opening intervention and one that too few patients ever experience before irreparable damage has been done.

Without question, we need to address the issue of rising health care costs in the United States, which greatly contributes to patients buying medicines online. However, legalizing importation isn’t the solution we need. It will undoubtedly lead more patients to risk their health and, ultimately, their lives through online drug purchases.

Consider the following: The World Health Organization estimates that 10 percent of medicines across the world are fake. In some parts of the world, this number is as high as 30 percent. In 2015, Interpol confiscated nearly 21 million fake medicines, a significant increase over the previous year.

As a society, why would we take our guard down when the threat is so high? As someone who is informed on health care issues (even at the time of my diagnosis), my search for Canadian pharmacies did little to warn me against the dangers. I had little knowledge or available information when I ordered medications from Canada.

Rather than open the floodgates to unregulated medicines, we should be doing more to ensure the safety and integrity of our drug supply. Last month, former FBI Director Louis Freeh released a report highlighting the incentives that drug importation would create for criminals who are actively marketing to consumers in the U.S. and the burden it would place on law enforcement who protect our drug supply.

Among his recommendations to be proactive on the issue, Mr. Freeh urges policymakers to conduct a detailed assessment of law enforcement’s readiness and ability to get in front of the threat that exists. I completely agree with Mr. Freeh - this should be our focus.

As we strengthen our defenses, we must also prioritize patient education and engagement initiatives to ensure that we’re deterring importation from the moment of diagnosis. The reality is that a number of online pharmacies with a Canadian flag attached to them are merely front doors for smugglers operating in countries across the globe.

There are viable ideas to combat the rising cost of healthcare – including prescription medications – but importation is not one of them.

Over the past two decades, we’ve made significant progress against HIV/AIDS. Today, there are medications available that we didn’t have just a few years ago. In fact, recent studies have shown that people in North America and Europe who are infected with HIV and who begin treatment with a triple-drug cocktail can expect to live nearly as long as people who aren’t infected by the virus.

Having lived with HIV for nearly 15 years, I know how important medicine is in achieving a sense of normalcy again. If we embrace drug importation, we’re sending a signal to patients across the country that their health and safety don’t matter. Lawmakers should not be playing a game of chance when patient lives hang in the balance.

This opinion piece was also published in the August 11th edition of the Washington Blade.

Friday, July 28, 2017

ADAP Leadership Award Honorees Help Navigate "Unchartered Water"

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Yesterday, honorees of the 2016-2017 ADAP Leadership Awards were announced by the ADAP Advocacy Association (aaa+®). The awards recognize individual, community, government and corporate leaders who are working to improve access to care and treatment for people living with HIV/AIDS  including the AIDS Drug Assistance Program (ADAP). This year's honorees reflect the organization’s conference theme, "Unchartered Water: AIDS Drug Assistance Programs in the Age of Trump."

The timing yesterday of the awards announcement was only fitting, as three Republican Senators joined all 48 Senate Democrats to kill the so-called "skinny bill" designed to repeal the Affordable Care Act (aka, Obamacare). So far this year, ADAP stakeholders — and many others — have been consumed by the uncertainty over the future of the ACA and the protections afforded to people living with HIV/AIDS. Whereas the "Age of Trump" is still unfolding, ACA repeal threatened the care for thousands of people living with HIV/AIDS either through ADAP premium assistance, Medicaid expansion, or ACA marketplace subsidies. That uncertainty has abated, at least for the short term.

Within the HIV/AIDS advocacy community, we are fortunate to be surrounded by so many inspirational leaders. They, too, serve as a reminder about the daily challenges faced by people living with HIV/AIDS, and yet how it is possible to overcome them. That is why it is important to reflect on the accomplishments achieved by individual, community, government and corporate leaders working to improve access to care and treatment for HIV/AIDS.

aaa+ Leadership Awards

The awards will be presented to this year's honorees during the 7th Annual ADAP Leadership Awards Dinner, which is being held in Washington, DC on Saturday, September 23rd. The following leaders will be honored:
  • Lifetime Achievement (individual): Paul Arons, MD & Paulette Heath
  • Champion of the Year (individual): Britten Pund, Director, Health Care Access, National Alliance of State & Territorial AIDS Directors (NASTAD)
  • Emerging Leader of the Year (individual): Khadijah Abdullah, Founder, RAHMA and Muslim Nannies
  • Corporate Partner of the Year: ViiV Healthcare
  • Community Organization of the Year: The Resource Group, Inc., Houston, TX
  • Lawmaker of the Year: The Honorable Marilyn Avila, General Assemblywoman (N.C.) & The Honorable Scott Wiener, State Senator (Calif.)
  • Social Media Campaign of the Year: Pozitively Dee Discussions, by Davina Conner
  • Grassroots Campaign of the Year: Network Empowerment Project (NEP) by SERO Project
  • Media Story of the Year: “America’s Hidden H.I.V. Epidemic” by Linda Villarosa, published in the New York Times on 06/06/17
Lifetime Achievement Award

Only the third time this award is being presented, it is being bestowed on two individuals who dedicated much their professional careers fighting the disease. Both are now retired.

Dr. Paul Arons has been advocating for people living with HIV/AIDS for several decades, never wavering in his commitment to promoting access to affordable care and treatment. He served as the medical director for the Florida Department of Health AIDS Program, where that state ADAP resides.  Paul remains involved in national advocacy, working with numerous national organizations. He continues to provide consulting to the Florida ADAP, and other regional and national organizations interested in ensuring optimal access to care and treatment for people living with HIV and Viral Hepatitis. Even in his retirement, Paul routinely reaches out to key stakeholders in the community to keep stakeholders updated on potential threats to safety net programs, such as Ryan White, ADAP, and Medicaid.

Paulette Heath was been a leader in the pharmaceutical industry at forging relationships with patient groups. During her tenure at Janssen Therapeutics, she continually sought input from community stakeholders, including hosting meetings in Washington, DC. Paulette ensured that Janssen Therapeutics was an informed industry partner, whether it through funding projects and events, sharing information about ADAPs, or promoting cross collaboration with other stakeholders. There was rarely an ADAP-related event whereby Paulette was not present, thus further demonstrating her commitment to improving access to care and treatment.

Champion Award

The ADAP Champion is the organization's oldest award, pre-dating the Annual ADAP Leadership Awards — which started in 2010. This year's award represents an important milestone, because it is the 10th time it is awarded.

Britten Pund has for many years been instrumental in advocating for people living with HIV/AIDS, and providing data to support the efforts of countless community organizations. Unrelenting in her mission, Britten works daily to ensure patients have access to ADAP resources, and professionally manages communications between pharmaceutical companies, AIDS Service Organizations, state agencies, healthcare providers, and others always keeping people living with HIV/AIDS as the top priority. For many years, Britten has helped to produce the ADAP monitor report annually for NASTAD. This data has broad value and reach contributing to ADAP decisions at the federal level, and state general assemblies across the country. She has presented at the Annual ADAP Conference for each of the last six years, and is expected to participate again this year.

Emerging Leader Award

Khadijah Abdullah started RAHMA, which addresses HIV/AIDS primarily in the American Muslim community. At the same time, RAHMA does not turn anyone away regardless of religious beliefs. According to RAHMA's website, "Rahma is the Arabic word for mercy. It is important to have mercy and compassion when supporting those living with HIV and spearheading educational efforts." In a very short period of time, Khadijah has positioned herself as a leading voice for an important marginalized community and achieving some pretty significant milestones. She has raised awareness about the important role Faith plays in the holistic continuum of care for many people living with HIV/AIDS.

Corporate Partner Award

ViiV Healthcare has launched numerous targeted projects, including community-led responses in resource limited settings and hostile environments for MSM and transgender people; its ACCELERATE! Initiative  which amplifies the voices of black gay men living with or affected by HIV; and its initiative on Closing the Gap in the Latinx Community. Additionally, ViiV's Positive Action Southern Initiative supports all populations living with HIV/AIDS in the South, it prioritizes support for the most impacted populations — including LGBTQ communities, youth, elderly, rural populations, formerly incarcerated, sex workers, and injection drug users.

Community Organization Award

The mission of The Resource Group, Inc. is to maximize all possible medical, psychosocial and educational resources to help persons affected by or at risk of HIV/AIDS with a primary focus in Northeast, Deep East and Southeast Texas. In September 2016, the Texas Department of State Health Services awarded funding to The Resource Group. Inc. to help improve the ADAP applications process by implementing ADAP workers at Ryan White agencies throughout Texas. As the only non-profit Ryan White Part B grant administration agency in Texas, we developed a system to implement, train and monitor the ADAP workers in a 51 county region, which includes rural East Texas and Houston.

Lawmaker Award

Former Representative Marilyn Avila served in the North Carolina House of Representatives from 2007 - 2016 representing Wake County, and served as a chair of the Health and Human Services Appropriations Committee. As a chair, she paid special attention to the budget for the NC AIDS Drug Assistance Program, and was committed to maintaining full funding for the program to guarantee all eligible individuals could receive medication. In 2016, she championed an effort supported by NC AIDS Action Network to expand access to care for ADAP to secure premium assistance for patients. Rep. Avila has also supported efforts to move North Carolina toward legalizing syringe exchange programs. In 2015, she was a lead sponsor on a bill to pilot used needle deposit sites, which was approved and paved the way for full needle exchange approval in 2016.

State Senator Scott Wiener was a vocal critic of the California Department of Health’s debacle over the state AIDS Drug Assistance Program contract, which resulted in interrupted treatment for clients, as well as possible data breach of client information. He commented, “I understand that the ADAP system is currently offline for an indefinite amount of time due to potential security breaches. Not only am I extremely concerned that personal information of ADAP clients may have been compromised, but also that the entire ADAP system is down during the height of open enrollment. Frankly, I am astounded that these system issues have yet to be resolved and continue to arise six months into the transition.” Senator Wiener was relentless in asking the tough questions that eventually led to the California DOH reversing course when it was evident that people living with HIV/AIDS were falling through the cracks.

Social Media Campaign Award

Pozitively Dee Discussions is a podcast hosted by Davina "Dee" Conner. Positively Dee Discussions promoted the Red Bow Tie campaign, in support of Heterosexual Men's HIV Awareness day on August 16th. It is aimed at supporting straight men with HIV, their needs, and the necessity create circles where straight men can connect and feel comfortable sharing their status. Creating that support helps straight men break through stigma and seek care that will protect their sexual health and their partner's sexual health. The podcast also collaborated with Rev. William Francis of the William Francis Ministries and Campaign Zero in Atlanta to promote the Red Bow Tie campaign on Heterosexual Men's HIV Awareness Day.

Grassroots Campaign Award

The Network Empowerment Project (NEP) was created by the Sero Project to facilitate the creation and strengthening of networks of people living with HIV (PLHIV) networks, whether the networks are focused on advocacy, education, recreation, provision of services or for mutual social support. NEP's goal is to support all such networks and make sure that those living with HIV who are newly-diagnosed are provided the opportunity to connect with the network(s) that can be most helpful to them in navigating the stigma, isolation, fear, loneliness, complicated treatment decision making and healthcare access issues and more.

Media Story Award

Authored by Linda Villarosa, "America’s Hidden H.I.V. Epidemic" highlighted why America’s black gay and bisexual men have a higher H.I.V. rate than any country in the world. It was published in the New York Times on June 6, 2017. The article was widely hailed as long-overdue, sounding the alarm over the disproportionate impact HIV/AIDS is having on this marginalized community.

Information about the awards is listed online at www.adapadvocacyassociation.org/awards.html.

Tickets to attend the awards dinner can be purchased online.

Thursday, July 20, 2017

HIV Medication Adherence: Supporting Successful Treatment Strategies

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Sticking firmly to an HIV medication regiment is probably the single most important thing people living with HIV/AIDS (hereafter referred to as patients) can do to help themselves remain healthy with an undetectable viral load. AIDSinfo explains why: "Adherence to an HIV regimen gives HIV medicines the chance to do their job: to prevent HIV from multiplying and destroying the immune system. HIV medicines help people with HIV live longer, healthier lives. HIV medicines also reduce the risk of HIV transmission."[1] Numerous strategies exist to promote better medication adherence to combat HIV/AIDS, with varying degrees of success.

Generally speaking about all health-related conditions, non-adherence results in additional healthcare costs, more hospital admissions, and approximately 125,000 deaths annually. Cost is often identified as the biggest barrier to better medication adherence.[2] Other barriers certainly exist.

Pill counter and pill bottle demonstrating importance of adherence

Pharmacists on are the front lines in promoting medication adherence to their patients. According to the American Association of Colleges of Pharmacy (AACP), "Pharmacists practice in nearly all areas and specialties in healthcare – sometimes behind the scenes and not obvious to the public eye, but as the medication expert on the healthcare team, pharmacists are necessary in all facets of healthcare."[3]

For example, Walgreens uses local, patient-centric model with 3,000 ACPE-trained pharmacists (Accreditation Council for Pharmacy Education), as well as HIV-specialized pharmacies in high-incident areas nationwide. To improve medication adherence, pharmacists provide approved culturally competent adherence support through monthly reminders and follow ups.[4] The direct interaction with patients serves as an important tool to promote HIV medication adherence.

A project in the Netherlands trained 21 nurses to work with patients on self-management of their HIV medication regiment, and the project yielded some promising results. The Adherence-Improving Self-Management Strategy (AIMS) approach included the nurses sharing important information about adherence with patients; setting adherence goals; utilizing electronic medication bottle caps; and intensive follow-up with the patients during scheduled office visits.[5]

Read a summary on AIMS and its potential for improving HIV medication adherence.

A commitment contract between the patient and healthcare provider can improve HIV medication adherence and virologic suppression, according to a recent study. In some cases, cash incentives were offered during the clinical trial. The study, conducted at a publicly-funded HIV clinic in Atlanta, Georgia, demonstrated the most adherent patients entered into "a commitment contract that made the payment conditional on both attending the provider visit and meeting an ART adherence threshold." These patients were more adherent than patients who had received cash incentives, or the passive control arm of the study.[6]

Read a summary on Commitment Contracts.

One of the most effective strategies for patients, especially considering today's technology, is downloading a free calendar reminder Application. Reminder Apps can be downloaded from the Internet or from numerous other places, such as iTunes, Google Play, Microsoft Store, etc. In fact, Healthline published a useful review on this very topic last year in, "The Best HIV/AIDS Apps of 2016."[7]

Other strategies include daily/weekly pill boxes, pre-packaged medications, patient support groups, fixed dose once-daily anti-retrovirals, just to name a few. Since every patient is different it is important to consider treatment strategies that reflect the needs of the patient.

Whereas numerous barriers can make following an HIV medication regiment difficult  such as cost, complexity of treatment,  missed appointments  there exist a plethora of options designed to support successful treatment strategies. Like any chronic condition, medication adherence for people living with HIV/AIDS is important. It prevents patients from developing drug resistance and treatment failure, it prevents unnecessary hospital admissions, and it prevents higher healthcare costs.


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[1] AIDSinfo (2017, July 17); National Institutes of Health; HIV Medication Adherence; U.S. Department of Health & Human Services. Retrieved from https://aidsinfo.nih.gov/understanding-hiv-aids/fact-sheets/21/54/hiv-medication-adherence.
[2] CVS Health News (2017); Cost is the Biggest Barrier to Medication Adherence; CVS Health. Retrieved from https://cvshealth.com/thought-leadership/cvs-health-research-institute/cost-biggest-barrier-medication-adherence.
[3] PHARMCAS (2017); Role of a Pharmacist; American Association of Colleges of Pharmacy (AACP). Retrieved from http://www.pharmcas.org/preparing-to-apply/about-pharmacy/role-of-a-pharmacist/.
[4] Hou, J., Kirkham, H., Pietrandoni, G., & Delpino, A. (2016, August 23 – 26). Patient adherence to antiretroviral medications among patients using HIV- Specialized pharmacy and traditional pharmacy settings. Paper presented at the 2016 National Ryan White Conference on HIV Care and Treatment, Washington, DC.
[5] Jungwirth, Barbara (2017, May 17); A Nurse-Led Adherence Strategy Improves Life for People With HIV and Saves Money; TheBody.com. Retrieved from http://www.thebody.com/content/79916/a-nurse-led-adherence-strategy-improves-life-for-p.html?ic=700100&sp_rid=NjI5OTAwMTAxMTMS1&sp_mid=11051078.
[6] Alsan, Marcella, et al. (2017, July); AIDS; A commitment contract to achieve virologic suppression in poorly adherent patients with HIV/AIDS; International AIDS Society Journal. Retrieved from http://journals.lww.com/aidsonline/Citation/2017/07310/A_commitment_contract_to_achieve_virologic.15.aspx.
[7] Carey, Elea, and Jared Fields (2016, June 13); The Best HIV/AIDS Apps of 2016; Healthline. Retrieved from http://www.healthline.com/health/hiv-aids/top-iphone-android-apps#1.

Thursday, July 13, 2017

Linkages to Care - Transgender Healthcare: Removing Barriers to Healthy Cultural Expectations

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

A regular discussion of efficacy in HIV programming is the distinction between “quality” vs “quantity” metrics of “success.” Personally, I find this distinction to be short sighted and even harmful. Then again, I’m a transgender man that witnesses the word-of-mouth requests for referrals within this highly marginalized community. These requests most often occur after a trans or gender non-conforming person has run into an issue with their current provider or a person in the provider’s office, be it staff or other clients. “Quality” of service directly impacts patient retention and health outcomes; otherwise often considered “quantity” metrics of success.

Those issues can include being called the wrong name, verbal or physical harassment, and having to inform your own medical provider about your specific health care needs.[1] We go to our doctors because they’re supposed to be safe, they’re supposed to know things we don’t know. And these “issues” aren’t isolated to medical providers, transgender people often face unconscious bias or harassment when seeking assistance and social services, again from our peers and from staff.[2]

Some of these issues were recently outlined in an infographic published by the ADAP Advocacy Association. Download the infographic.

Infographic

When we can’t trust our providers, our case managers as our advocates, or the environment in which we’re supposed to engage them to be safe, we will opt for our own immediate safety over our long(er) term health needs. This is a large part of why those community based, word-of-mouth referrals mean so much to transgender communities: we need to feel and be safe in a world that is often threatening and dangerous.

The World Professional Association for Transgender Health (WPATH) has worked consistently and continuously to create a guideline for providers in transgender care to combat the barriers clients face, updating standards regularly to be more culturally competent. However, that doesn’t provide information to clients on where to go that is safe. That lack of centralized, reliable information is part of why RAD Remedy began building a community based referral database.

With transgender people experiencing lack of legal protections in employment, housing, and medical care and transgender women facing an HIV prevalence rate almost 50 TIMES higher than the general population,[3] the combined situation of lack of resources and heightened risk creates an environment of critical necessity of trans competency among HIV service providers.

Despite the focus on received medical care in these statistics, our social workers are our greatest allies and advocates in seeking the help we need, when we need it. Case managers have the opportunity to reach transgender people living with HIV at the moment dropping out of care becomes something a client has to consider. Peer advocates have the chance to help us change our stories when running into barriers that feel insurmountable.

In so many ways, big and small, our social workers are our life lines when they’re on our side, when we feel seen, and when we know we can trust them to have our backs.

In an effort to raise awareness about transgender health for people living with HIV/AIDS and/or viral hepatitis, we will host an educational training webinar on July 26, 2017. The webinar, "Transgender Healthcare: Removing Barriers to Healthy Cultural Expectations," will provide an introduction to systemic social and policy barriers that separate trans and gender diverse individuals from effective, culturally competent medical and mental health services that they need. Topics include multifaceted meanings of gender terms, defamatory stereotypes that impact trans health and access to care, and current and emerging issues in diagnostic, medical, and public policy.

Registration is open to all stakeholders. Registration is complimentary for PASWHA members, and it is also complimentary for patients living with HIV/AIDS. Use this scholarship link if you are a patient living with HIV/AIDS applying for a webinar scholarship.

Additional information about the webinar is available online at https://www.123signup.com/event?id=nhjqn.


Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

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[1] Grant, J. M., Mottet, L, A., Tanis, J. (with Herman, J. L., Harrison, J., & Keisling, M.) (October 2010); National transgender discrimination survey report on health and health care; Findings of a Study by the National Center for Transgender Equality and the National Gay and Lesbian Task Force. Retrieved from http://www.thetaskforce.org/static_html/downloads/resources_and_tools/ntds_report_on_health.pdf
[2] National Center for Transgender Equality (2016); The report of the 2015 U.S. transgender survey; National LGBTQ Task Force and the National Center for Transgender Equality. Retrieved from http://www.ustranssurvey.org/report
[3] Centers for Disease Control and Prevention (2016); HIV among transgender people. Retrieved from https://www.cdc.gov/hiv/group/gender/transgender/

Thursday, June 29, 2017

Promoting & Protecting the AIDS Drug Assistance Program

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

aaa+ ADAP Advocacy Association - Celebrating 10 Years - Promoting & Protecting the AIDS Drug Assistance Program
July 2007 officially marked the birth of the ADAP Advocacy Association, when a small Steering Committee filed the non-profit Articles of Incorporation in the District of Columbia and applied for its 501(c)(3) tax-exempt status with the Internal Revenue Service (which would be granted five months later). For a decade, we have been "promoting and protecting the AIDS Drug Assistance Program" (ADAP).

None of it would have happened without the steady guidance from D. Ben Tesdahl, attorney for Powers, Pyles, Sutter & Verville (PPSV)  who provided his services pro bono, and as such would receive our very first ADAP Champion Award the following year in 2008! "Steady guidance" because along the way in obtaining our registered trademark, we bumped heads with the Automobile Association of America and Blue Cross Blue Shield (...it's a very long story). Thank you, Ben!

Earlier this year, we posted about our "10 Years of Accomplishment, Advocacy & Access to Care" to recap some important milestones attained throughout our organization's history. None of these accomplishments would have happened without the tireless commitment and leadership from the individuals who have served on our Board of Directors since July 2007.

As we unveil our anniversary logo celebrating 10 years of providing the patient voice for people living with HIV/AIDS who rely on ADAP, we also dedicate this blog post to these twenty-five wonderful individuals. It is our way of saying "thank you" for their service! Our board members have included:
  • James Albino, 2008 to 2009
  • Michelle Anderson, 2009 to present
  • William E. Arnold, 2007 to present
  • Aaron Baldwin, 2014 to 2015
  • Robert Breining, 2010 to 2015
  • Wanda Brendle-Moss, RN, 2015 to present
  • Janine Brignola, 2011 to 2016
  • Elmer R. Cerano, 2008 to present
  • Crosby Cromwell, 2010 to 2013
  • Eric Flowers, 2012 to present
  • Darryl Fore, 2011 to present
  • Philip A. Haddad, MD, 2007 to present
  • Hilary Hansen, 2016 to present
  • John D. Kemp, Esq, 2007 to 2009
  • Jen Laws, 2016 to present
  • Duane Malone, 2009 to 2010
  • Glen Pietrandoni, Rh.P, 2009 to present
  • Gary Rose, 2007 to 2008
  • Elizabeth Shepherd, 2010 to 2015
  • Keita Simmons, 2007 to 2009
  • Robert Suttle, 2015 to present
  • Chrys Thorsen, 2014 to 2016
  • Joyce Turner-Keller, Arch-Bishop, 2007 to 2012
  • Rani G. Whitfield, MD, 2007 to 2008
  • Joey Wynn, 2009 to present
Among our directors, John D. Kemp, Gary Rose, and Arch-Bishop Joyce Turner-Keller, and Dr. Rani Whitfield have been named Directors Emeritus. We look forward to another decade dedicated to raising awareness, offering patient educational program, and fostering greater community collaboration.

Thursday, June 22, 2017

Summer is Hot, but the Debate Over Drug Pricing could be even Hotter

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Temperatures across the United States are sizzling with the arrival of summer, but they could pale in comparison to the emerging debate over the rising cost of prescription drugs. A state ballot initiative, coupled with a rumored presidential executive order and pending federal legislation in Congress are setting the stage for a heated battle over drug pricing.

In Ohio, voters are already being inundated with 30-second political attack ads from both sides of the debate. One advocate in the state has said, "Every commercial break is flooded with them... and it is only summer." The "Ohio Drug Price Relief Act" will take center stage before the voters in November 2017, with spending on political ads expected to break all previous records for any statewide ballot initiative.

The ballot initiative would "require the state of Ohio to pay no more for prescription drugs than the U.S. Department of Veterans Affairs (VA), which has negotiated a discount of up to 40 percent."[1] It is supported by the Ohio Taxpayers for Lower Drug Prices, and it is opposed by the Ohioans Against the Deceptive Rx Ballot Issue. Veterans groups have also lined up against the ballot initiative.

According to Ballotpedia, a "yes" vote supports the measure to require state agencies and programs to purchase prescription drugs at prices no higher than what the VA pays for them, and a "no" vote opposes the measure to require state agencies and programs to purchase prescription drugs at prices no higher than what the VA pays for them.[2]

"I would assume that the happiest people in Ohio today are the people who are selling television commercials. The pharmaceutical industry will spend whatever they believe they need to spend to try to confuse and mislead the public," summarized Rick Taylor, a consultant for the Ohio Taxpayers for Lower Drug Prices.[3] Here is a political ad airing in support of the ballot initiative:

TV commercial linked to https://youtu.be/HlubsZisoVQ
Source: Ohio Taxpayers for Lower Drug Prices

Curt Steiner, campaign manager for the Ohioans Against the Deceptive Rx Ballot Issue, argued, “Experts who have studied the proposal — including three former Ohio Medicaid Directors and a former state Budget Director — say it’s not only unworkable, but could actually increase prescription drug costs for the majority of Ohioans and reduce patient access to needed medications.”[4] Here is a political ad running against the ballot initiative:


Source: Ohioans Against the Deceptive Rx Ballot Issue

With the ballot initiative over four months away, voters in Ohio might simply turn off their televisions rather than contend with the forthcoming onslaught of these negative ads. There has been no public polling released on the issue in Ohio (...yet), but a similar ballot initiative failed last November in California.

In the meantime, news reports are floating that President Donald J. Trump plans to issue an executive order on drug pricing, though the timeline remains unclear. A draft version of the executive order, which was obtained by The New York Times, appears to give into demands by the pharmaceutical industry and rolls back numerous regulations.[5]



Some had hoped for rebates in Medicare Part D that would be similar to Medicaid,[6] but they appear absent from the draft obtained by The New York Times. Such a move would have greatly benefited consumers. It hard to see how the draft executive order would assist consumers, or public payors — such as State AIDS Drug Assistance Programs.

The measure is already being met with skepticism, especially because it appears to roll-back discounts authorized under the 340B Drug Discount Program. Dr. Joshua M. Sharfstein, a professor at Johns Hopkins Bloomberg School of Public Health, summarized this concern by saying, “That’s one that sticks out as a bit of a head scratcher. This is the executive order to lower drug prices — why would you put in a provision that would raise drug prices?[7]

Speaking for many in the patient advocacy community, Eddie Hamilton with the ADAP Educational Initiative questioned, "We don’t have any further information on this proposed draft, but it does raise some concerns. It appears to target 340B and the hospitals are, of course, screaming but we can’t verify that our community will be spared."

Congress isn't absent from the debate over drug pricing. In fact, a recent article in Roll Call spelled out the enormous pressure faced by lawmakers to do something on lowering the cost of prescription drugs. Presently, 802 bills addressing drug pricing have been introduced in Congress since the beginning of the year. Among them are the following:
  • S.1369 - A bill to amend the Internal Revenue Code of 1986 to establish an excise tax on certain prescription drugs which have been subject to a price spike, and for other purposes. (Note: H.R.2974 is the companion legislation before the House of Representatives)
  • S.1131 - Fair Accountability and Innovative Research Drug Pricing Act, which is a bill to require reporting regarding certain drug price increases, and for other purposes. (Note: H.R.2439 is the companion legislation before the House of Representatives)
  • H.R.1316 - Prescription Drug Price Transparency Act, which is a bill to amend title XVIII of the Social Security Act to provide for pharmacy benefits manager standards under the Medicare prescription drug program and Medicare Advantage program to further transparency of payment methodologies to pharmacies, and for other purposes.
  • H.R.242 - Medicare Prescription Drug Price Negotiation Act, which is a bill to amend part D of title XVIII of the Social Security Act to require the Secretary of Health and Human Services to negotiate covered part D drug prices on behalf of Medicare beneficiaries.
Ballot initiatives, executive orders, and legislation are all stoking the flames over the drug pricing debate, but they don't even include ongoing litigation filed by 20 state attorney generals. It is clear that the issue has reached a climactic point and something needs to be done about it. The ADAP Blog will continue to monitor each of these developments.


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[1] Pelzer, Jeremy (2017, May 3). Fight over Ohio Drug Price Relief Act ballot issue could set spending record. Cleveland.com. Retrieved from http://www.cleveland.com/politics/index.ssf/2017/05/fight_over_ohio_drug_price_rel.html.
[2] Ballotpedia. Ohio Drug Price Standards Initiative (2017). Retrieved from https://ballotpedia.org/Ohio_Drug_Price_Standards_Initiative_(2017). 
[3] Pelzer, Jeremy (2017, May 3). Fight over Ohio Drug Price Relief Act ballot issue could set spending record. Cleveland.com. Retrieved from http://www.cleveland.com/politics/index.ssf/2017/05/fight_over_ohio_drug_price_rel.html.
[4] Troy, Tom (2017, May 23). Opponents launch TV ad against Ohio Drug Price Relief Act. The Toledo Blade. Retrieved from http://www.toledoblade.com/State/2017/05/23/Opponents-launch-TV-ad-against-Ohio-Drug-Price-Relief-Act.html.
[5] Kaplan, Shelia, and Katie Thomas (2017, June 20). Draft Order on Drug Prices Proposes Easing Regulations. The New York Times. Retrieved from https://www.nytimes.com/2017/06/20/health/draft-order-on-drug-prices-proposes-easing-regulations.html.
[6] Nather, David (2017, May 12). Mulvaney says Trump wants executive action on drug prices. Axios. Retrieved from https://www.axios.com/vitals-2403219901.html.
[7] Kaplan, Shelia, and Katie Thomas (2017, June 20). Draft Order on Drug Prices Proposes Easing Regulations. The New York Times. Retrieved from https://www.nytimes.com/2017/06/20/health/draft-order-on-drug-prices-proposes-easing-regulations.html.