Showing posts with label viral hepatitis. Show all posts
Showing posts with label viral hepatitis. Show all posts

Thursday, September 24, 2020

COVID-19's Impact on Rural Health Services Providers

By: A. Toni Young, Founder & Executive Director, Community Education Group

In partnership with Cardea and TruEvolution, Community Education Group (CEG) is spearheading an effort to learn how COVID-19 is impacting Rural Health Services Providers (RHSPs) so they can better facilitate conversations with policymakers and advocate to expand access to resources to support client care. COVID-19 is presenting a unique set of challenges in rural communities as local providers try to tackle HIV, viral hepatitis, and substance use disorder. 

Our Vlog summarizes the work being done by CEG to address these disparities in rural communities.

A. Toni Young

To view the Vlog, visit https://www.adapadvocacy.org/urls/CANN_Video-Blog.mp4.

About Community Education Group. The Community Education Group (CEG) is a 501(c)3 not-for-profit organization working to eliminate disparities in health outcomes and improve public health in disadvantaged populations and under-served communities. CEG accomplish this by conducting research, training community health workers, educating and testing people who are hard to reach or at risk, sharing our expertise through national networks and local capacity building efforts, and advocating for practical and effective health policies that lead to social change. CEG has offices in both Washington, DC, and Shepherdstown, WV, and has recently partnered with TruEvolution, Inc. (Riverside, CA) to found the Rural Health Service Providers Network which advocates on behalf of organizations providing essential services to clients living in rural America. Donate to Community Education Group.

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, June 6, 2019

2019 HealthHCV State of HCV Health National Survey!

By: Brian Hujdich, Executive Director, HealthHIV

HealthHCV is fielding the 2019 HealthHCV State of HCV Care National Survey(TM). This annual survey reaches providers nationwide, including hepatologists, gastroenterologists, infectious disease specialists, HIV care providers, primary care providers, and others screening for and/or treating hepatitis-C. The 2019 survey, developed with input from viral hepatitis advocacy groups, payers, and HCV care providers, builds on the findings from HealthHCV’s inaugural Report on the State of HCV Care, based on a survey of almost 200 prescribing providers involved in HCV care. The inaugural survey formed some of the first data points regarding the provision of HCV care and treatment in the U.S.

2019 HealthHCV State of HCV Care National Survey

While advances in HCV cure therapy have led to improved survival rates for patients with cirrhosis, reduced health care costs, and a reduced need for liver cancer surveillance, a more comprehensive approach to HCV care is needed to curb the epidemic, especially as the opioid crisis continues to fuel increases in new infections.

The State of HCV Care is integral to understanding and improving current HCV care and prevention efforts, as well as shaping advocacy and policy needs. There are currently few efforts to collect information on hepatitis C (HCV) care and treatment in the U.S., and these survey results serve as some of the first national data points regarding provision of HCV care. The data collected from this survey provides an opportunity for those on the front lines of HCV care to cite challenges and barriers to providing necessary services. This year’s survey will evaluate the latest impacts on HCV screening practices, treatment access and reimbursement, barriers to care, provider training needs, and integration and coordination of HCV services with behavioral health and substance use treatment.  

Your feedback is critical to shape national HCV advocacy, education, and training in 2019 and beyond that contribute to ending the HCV epidemic! In order to take the survey please press HERE.

About HealthHCV: HealthHCV’s unique role in evaluating national provider needs helped shape a robust suite of current education offerings on HCV, including the 20x20 Initiative: Increasing HCV Screening and Linkage to Care by 2020 and Addressing the Evolving Opioid and HCV Epidemics Through Community Engagement and Education.




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, May 30, 2019

HIV Training in General Medicine

By: Marcus J. Hopkins, Policy Consultant

HIV in the United States is an issue that isn’t going away, anytime soon, despite the fact that the incidence of new infections has continued to decline annually since 2012 (Centers for Disease Control and Prevention, 2018). Other bright spots exist on the HIV front, as well:
  • The majority of HIV treatments released since 2010 have been easy-to-tolerate, single-pill regimens, cutting down on the number of medications patients have to take to achieve and sustain viral suppression;
  • Patients no longer have to wait until they are diagnosed as “AIDS” in order to begin treatment (as was the case when I was first diagnosed), initiating treatment immediately upon receiving an HIV diagnosis;
  • Fourth- and Fifth-Generation HIV combination testing assays have reduced significantly the time between initial infection and the time when HIV can be detected down to 1 month or 14 days (respectively);
  • The reality that treatment will soon be available in once-monthly long-term injectable form; and
  • Data indicating that people with undetectable HIV viral loads cannot transmit the disease to others.
These bright spots all point to one thing: the time has come to begin taking HIV out of the realm of specialized medicine, and into the general practice.

When HIV first hit the medical scene in the early-1980s, circumstances required that the disease become the provenance of Infectious Disease (ID) specialists.  As times have progress, however, HIV has become increasingly easier to diagnose, treat, and manage, so much so that conversations need to be had about beginning to shift at least some aspects of treatment off of ID docs, and over to General Practitioners (GPs).

This is particularly true when it comes to prevention – a task which was supposedto be falling to GPs in the form of biannual HIV, STD, and STI testing, but which GPs have been notoriously lax in doing (a topic for another blog, really). That said, we have at our fingertips one of the most effective methods of preventing HIV transmission in the history of the disease: Pre-Exposure Prophylaxis (PrEP).

PrEP
Photo Source: POZ

PrEP, for the uninitiated, is the medical repurposing of HIV drugs – Truvada (emtricitabine and tenofovir disoproxil fumarate) and, soon, Descovy (emtricitabine and tenofovir alafenamide fumarate) – that, when taken properly, can prevent the spread of HIV via sexual contact by more than 90% and by more than 70% among People Who Inject Drugs (PWIDs). This is an amazingtool that can be used to essentially eliminate the risk of HIV transmission in the U.S. and, potentially, around the world.

The problem? Nobody’s using it.

In 2017, there were a total of 100,282 PrEP users in the United States (AIDSVu, 2019). There were roughly 1,008,929 people living in the United States who are diagnosed with HIV in 2016 (CDC), and the total U.S. population is 327,200,000. If we subtract that 1,008,929, we’re left with approximately 326,191,071 people in the nation who are notinfected with HIV. That means that 0.03% of the non-HIV-infected U.S. population was prescribed PrEP.  Granted, not every single one of those 326,191,071 people face a high risk of HIV infection, particularly if take into account the number of children. That said, the number of PrEP users is astonishingly low.

Among the various barriers to receiving PrEP – financial barriers, social stigma-related barriers, geographic barriers – perhaps the biggest hurdle faced by patients who would like to take advantage of this groundbreaking prevention method is that few medical providers know anything or enough about the drug, its utilization, and HIV to be comfortable prescribing the regimen. This is troubling, because PrEP – the medication – can be prescribed by literallyany prescribing physician (although payor approval may require consultation with or prescribing by a ID specialist).

A recent study published in the Journal of General Internal Medicine found that even though 96% of 229 internal medicine residents surveyed had heard of PrEP, more than half rated their knowledge of the medication and its side effects as only fair or poor (Terndrup, et al., 2019). The authors write, “Residents who rated their knowledge more highly reported a greater likelihood of prescribing PrEP in the future.”

Two General Practitioners reviewing a medical chart
Photo Source: Business Insider

Essentially, the more physicians know about PrEP, the likelier they are to prescribe the regimen – a drum that PrEP advocates and activists have been beating since the regimen first became available in 2012. Seven years after it was first made available for prevention purposes, and only 0.03% of the non-HIV-infected U.S. population is utilizing this tool? That’s simply unacceptable.

With all of these advances in HIV prevention tools and treatment, for proactive patients (like myself), HIV has largely become a “maintenance” disease. I take my meds every night, at Midnight, I see my ID specialist twice a year, and the majority of our conversations are collegial in nature about my work in viral hepatitis. I have my blood drawn, I see my Ryan White caseworker, and I have my prescriptions renewed. I am a low-maintenance patient.

For me, and patients like me, my HIV maintenance is something that could essentially be shifted off onto a GP, allowing my ID specialist to focus his time and efforts onto patients with greater needs and/or challenges. This additional focus could potentially allow those higher-maintenance patients to become better stewards of their own health, eventually allowing them to ideally move their treatment over to a GP, as well. In this ideal scenario, where GPs are better educated, trained, and knowledgeable about HIV and its various treatment regimens, this could potentially open up dozens of new provider options, reducing the need to travel to ID specialists, and instead receive treatment from someone more local.

For patients who are not living with HIV, increased GP training, education, and knowledge about HIV and its prevention via PrEP has the potential to exponentially increase utilization of PrEP and decrease new HIV infections, even among PWIDs – a growing concern in areas of the country hardest hit by the opioid epidemic (i.e. – rural and suburban areas of the country). In areas where ID specialists are rare, the option of being prescribed a preventative medicine to prevent HIV infection by a local GP would be a godsend.

Terndrup’s study indicates that residents are more likely to prescribe if they have more knowledge. This is something that can and should be easily provided to them, and it is incumbent upon those in charge of these residency programs to begin instituting HIV training within their programs.

References:



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, December 13, 2018

HIV/AIDS Fireside Chat Retreat in Boston Tackles Pressing Issues

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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Boston, Massachusetts among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS and/or viral hepatitis. The Fireside Chat took place on Thursday, November 8th, and Friday, November 9th, and it built on the previous retreat held in Tampa, Florida earlier in the year.

FDR Fireside Chat
Photo Source: Getty Images

The Fireside Chat included a series of three moderated white-board style discussions about the following issues:
  • HIV & Aging
  • Drug Importation
  • Ryan White Program Reauthorization
Each of the white board discussions was facilitated by a recognized content expert followed by an in-depth dialogue among the retreat attendees. The discussions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Fireside Chat.

The following represents the attendees:
  • Tez Anderson, Executive Director & Founder, Let’s Kick ASS (AIDS Survivor Syndrome)
  • William E. Arnold, President & CEO of the Community Access National Network (CANN)
  • Marcus Benoit, Ryan White Regional Liaison & Eligibility Coordinator, Houston Regional HIV/AIDS Resource Group, Inc.
  • Brandon Cash, Theratechnologies
  • Jeffrey S. Crowley, Program Director at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center
  • Tishna Dhaliwal, Director, Healthcare Policy & Strategy, Johnson & Johnson
  • Edward Hamilton, Executive Director & Founder of ADAP Educational Initiative
  • Hilary Hansen, Executive Director, Advocacy & Strategic Alliances (US) at Merck
  • Stephen R. Hourahan, Executive Director, AIDS Project Rhode Island (APRI)
  • Lisa Johnson-Lett, Treatment Adherence Specialist / Peer Educator, AIDS Alabama
  • Brandon M. Macsata, CEO of the ADAP Advocacy Association
  • Julie Marston, Executive Director, Community Research Initiative (CRI)
  • Tim Miley, Associate Director, State Government Affairs – Northeast, Gilead Sciences
  • Theresa Nowlin, advocate
  • David Pable, Community Co-Chair SC HIV Planning Council
  • Samantha Picking, PharmD, RPh, AAHIVP, Healthcare Specialty Supervisor, Walgreens
  • David Reznik, Chief, Dental Medicine, Grady Health System Infectious Disease Program
  • Alan Richardson, Executive Vice President of Strategic Patient Solutions, Patient Advocate Foundation
  • Shabbir Imber Safdar, Executive Director, The Partnership for Safe Medicines
  • Carl Sciortino, VP of Government & Community Relations, Fenway Health
The ADAP Advocacy Association is pleased to share the following brief recap of the Fireside Chat.

HIV & Aging:

The discussion on HIV & Aging was facilitated by Tez Anderson, Executive Director & Founder, Let’s Kick ASS (AIDS Survivor Syndrome) based in San Francisco, CA. Anderson has coined the phrase, AIDS Survivor Syndrome, to address the litany of issues facing HIV/AIDS long-term survivors. Adults over 50 make up the majority of people living with HIV/AIDS in the United States. By 2020, it will increase to 70%. According to Anderson, "Aging populations present challenges to the healthcare system, and providers are ill-prepared for an aging population. We are going to have be creative in devising new strategies for providing integrated HIV and geriatric care, and for meeting the long‐term needs of clients with increasingly complex needs."

Since aging with HIV is not a monolithic, retreat attendees dived into accentuated aging, living with co-morbidities, HIV-related enteropathy and/or peripheral neuropathy, as well as other issues affecting quality of life for the aging HIV population.

The following materials were shared with retreat attendees:
The ADAP Advocacy Association would like to publicly acknowledge and thank Tez for facilitating this important discussion.

Drug Importation:

According to Shabbir Imber Safdar, Executive Director, The Partnership for Safe Medicines, there are a wide variety of options for addressing financial impediments to healthcare access. The healthcare supply chain is convoluted and two people that receive the same treatment, test, or medicine often pay wildly different amounts. Not all of these are equally safe for patients.

Shabbir challenged the retreat attendees with a series of questions. First, we must understand the supply chain. How does it work in the US vs other countries? When it fails, how does it fail? What examples of failure exist that we can learn from? How do counterfeits get into our supply chain? Is our drug supply safer or more polluted than other countries? Why is that?

The discussion about the dangers involved with drug importation, including what exactly is the risk of patients breaking the supply chain? Is it just a loss of financial resources? Is a counterfeit that's just a placebo really that dangerous? And beyond the potential dangers, then other issues emerge when obtaining medicine from other countries domestic drug supply. Do they have shortages of their own? Are there other countries large enough to supply medicine to us?

The retreat attendees were also asked, so what's the answer? Can we judge different proposals on the basis of patient safety? Is there any time we want to sacrifice patient safety for access?

The following materials were shared with retreat attendees:
The ADAP Advocacy Association would like to publicly acknowledge and thank Shabbir for facilitating this important discussion.

Ryan White Program Reauthorization:

The discussion about underserved communities served (or potentially served) by the Ryan White Program was facilitated by Jeffrey S. Crowley, Program Director at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center. The world has changed since the 2009 reauthorization, as Jeffrey noted during this discussion. Research trials definitively have confirmed the benefits of immediate treatment, and the clinical guidelines have also changed. The use of care continuum and monitoring of durability of viral suppression continue to highlight gaps in care. The enactment of the Affordable Care Act (32 states and 62% of the HIV population lives in states that have expanded Medicaid) has changed the healthcare landscape. The 340B Drug Pricing Program is under pressure.

Some of the emerging issues/needs identified included the ongoing role of Ryan White in larger insurance system; early treatment and rapid start of ART/better supports for re-engaging people in care; addressing the needs of an aging HIV population; role of Ryan White in covering PrEP and PEP; Ryan White as a model for or its role in curing HCV and addressing the opioid crisis; and new technology is coming: preparing for long-acting agents.

Finally, Jeffrey led an all important dive into the risks in not reauthorizing versus the risks in reauthorizing the Ryan White Program. The Democrats regaining control of the U.S. House of Representatives certainly changes the dynamics surrounding possible reauthorization. 

The following materials were shared with retreat attendees:
The ADAP Advocacy Association would like to publicly acknowledge and thank Jeffrey for facilitating this important discussion.

Additional Fireside Chats are planned in 2019.

Thursday, May 3, 2018

Infographics Serve as Powerful HIV Advocacy Tools

By: Brandon M. Macsata, CEO, ADAP Advocacy Association
"Infographics are a powerful way of communicating information since they combine data and visual images – left brain and right brain – thereby making it easier to digest, remember and share information."[1]
Infographics are widely recognized as an important and powerful educational tool. In fact, online marketing has increasingly become saturated with infographics on a wide array of topics, including public health. Countless books, periodicals and blogs have been dedicated to this subject. According to the Wharton School of Business, infographics are more engaging and convincing because "presenters who used visual language were perceived by audiences as more effective than those not using visuals."[2] Thus, infographics can also serve as powerful HIV advocacy tools.

Why are infographics so effective
Photo Source: missdetails.com

AIDSinfo has made available an online library for their infographics. They include infographics on treatment options, prevention strategies, and general information about living with HIV.

HIV advocates would be well-served to leverage these infographics (and others) as visual advocacy tools, especially when meeting with policymakers at the federal, state and local levels. Infographics are an excellent way to condense a complex issue into a simple message. The ADAP Advocacy Association, in fact, has published numerous infographics and made them available to stakeholders. In April 2017, an infographic on transgender health was published on Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program.

The Centers for Disease Control & Prevention ("CDC") also offers many HIV-related infographics. CDC infographics and posters include various topics related to HIV including African Americans, Continuum of Care, Gay and Bisexual Men, HIV Testing, Latinos, Pre-Exposure Prophylaxis ("PrEP"), Women, and Youth. The AIDS Education & Training Center Program ("AETCP") has an robust library of these visual presentations on their website.

Last year, two powerful infographics complemented the 2017 National ADAP Monitoring Report when it was released by the National Alliance of State & Territorial AIDS Directors ("NASTAD"). One infographic, Key Characteristics of Ten ADAPs With Highest Rates of Viral Suppression, gives an analysis on ADAPs with the highest rates of viral suppression. The other one, Ryan White Part B and ADAP Partnership to Bolster Health Outcomes, gives an analysis on the Ryan White Part B and ADAP partnership. Anyone who has read NASTAD's annual report know how much data is shared in it, so these infographics provide an amazing snapshot.

Increasingly viral hepatitis is an emerging issue, as more people living with HIV/AIDS are also co-infected with Hepatitis C ("HCV"). The Community Access National Network ("CANN") has used infographics to tackle complex issues surrounding HCV. Among them are their infographics on HCV and Health Law In U.S. Incarceration Settings (2017), and Hepatitis C Therapies Covered by the AIDS Drug Assistance Programs (2015).

Effective grassroots communication and lobbying by HIV advocates can help to influence a position or outcome on a particular issue. Being sensitive to time constraints of policymakers is important, which makes using infographics even more important. The advocates who get the most value from infographics are those that see them as part of a wider strategy to support grassroots efforts at the federal, state, and local levels.

5 reasons why infographics work
Photo Source: Ragan.com

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[1] Aleksejeva, Nika (2015, September 6). The Power of Infographics: Why, What and How. Infogram. Retrieved from https://infogram.com/blog/the-power-of-infographics-why-what-and-how/.
[2] Long, Jonathan (2014, September 23). The Power of Visual Content [Infographic]. Market Domination Media®. Retrieved from https://www.marketdominationmedia.com/power-visual-content-infographic/.

Thursday, May 25, 2017

Trump's Proposed Federal Budget Puts Bullseye on People Living with HIV/AIDS (and many other chronic conditions)


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

The executive budget — which is mandated by federal law to be submitted by the President of the United States to Congress — is rarely taken seriously because the legislative branch typically adopts a federal budget that does not come close to resembling the budget proposed by the executive branch. That said, it does signal the President's priorities for the coming year. Sadly, President Donald J. Trump's proposed budget makes clear that people living with HIV/AIDS (among many other chronic health conditions) aren't among his priorities.

The ADAP Advocacy Association was quick to condemn Trump's proposed budget via Twitter @adapadvocacy.

Trump Administration's proposed budget is a complete nightmare, but fortunately Congress never adopts the prez budget. #HIV #NoFundingCuts
There is an emerging pattern with Trump, which started during the presidential primary and continued throughout the general election...and now into his presidency. He routinely makes statements that completely contradict one another, and his proposed budget continued that trend.

How?

Trump's budget for the U.S. Department of Health & Human Services ("HHS") included legislative language relevant to the reauthorization of the Ryan White CARE Act, which is technically due for an update. The language reads:
"The Administration looks forward to working with Congress to reauthorize the Ryan White program to ensure that Federal funds are allocated to address the changing landscape of HIV across the United States. Reauthorization of the Ryan White program should include changes to the funding methodologies for Parts A and B to ensure that funds may be allocated to target populations experiencing high or increasing levels of HIV infections/diagnoses, such as minority populations, while continuing to support Americans that are already living with HIV across the nation. African Americans, for example, account for a higher proportion of new HIV diagnoses, those living with HIV, and those ever diagnosed with AIDS as compared to other races/ethnicities. The new Ryan White authorization should allow for resources to be focused on populations with disproportionately high rates of new infections/diagnoses."
Yet, that same budget called for draconian funding cuts to numerous federal programs specifically designed to assist people living with HIV/AIDS (including some authorized under the very same Ryan White). Among them:
  • Eliminating $34 million for AIDS Education and Training Centers
  • Eliminating $25 million for Special Projects of National Significance
  • Reducing $13 million in funding for Rural Outreach Grants (19.05% decrease)
  • Eliminating $42 million for Rural Hospital Flexibility Grants 
  • Reducing $7 million in funding for Telehealth (41.18% decrease)
  • Reducing $9 million in funding for State Offices of Rural Health (90% decrease)
  • Reducing $186 million in funding for HIV/AIDS, Viral Hepatitis, STIs and TB Prevention (16.61% decrease)
  • Reducing $1.3 billion in funding for Social Services Block Grant (78.69% decrease)
The budget also calls for flat funding for many other HIV-specific programs, including the AIDS Drug Assistance Programs (ADAPs) at $899 million. That might be acceptable under "normal" conditions, but the President and the Republican-led Congress are simultaneously trying to rollback numerous protections provided under the Affordable Care Act ("ACA") — such as Medicaid expansion, and Essential Health Benefits. It includes significant cuts to programs authorized under the National Institutes of Health ("NIH"), as well as programs providing mental health services, housing assistance, and addiction treatment.

Trump's budget has been universally denounced by the HIV/AIDS and Viral Hepatitis communities, as noted herein:
  • Ken Bargar, Co-Chair, Florida HIV/AIDS Advocacy Network (FHAAN): "Somewhere the President's advisors failed him. These are budget cuts to peoples' lives, their medications, their care and their shelter. As advocates, we cannot allow this budget to get any traction or legitimize it in any way. Congress appropriates our country's spending and that's were we should put our efforts. Let's let every Member of Congress know we won't stand for an administration that is willing to kill it's own people."
  • Michael Ruppal, Executive Director of The AIDS Institute: "The country has made great progress in the fight against HIV/AIDS and STDs, but if these cuts are enacted, we will turn back the clock, resulting in more new infections, fewer patients receiving care, and ultimately, more suffering from diseases that are preventable and treatable."
  • William E. Arnold, President & CEO of the Community Access National Network: "The president’s budget fails to meet the rising tide of viral hepatitis at a time when we’re on the cusp of seeing a sharp rise in new Hepatitis C infections. Flat funding HCV programs, while also cutting key HIV-related programs will prove problematic as we attempt to address the growing number of individuals co-infected with both HIV, and HCV."
  • Jesse Milan, Jr., President & CEO of AIDS United: "We have seen historic decreases in the number of new HIV infections over the past six years because of sustained investments in prevention, and we have thousands of HIV positive Americans who have yet to achieve viral suppression through treatment programs. By cutting funding, the work we have done will be reversed, and all the work left to do will falter and put the health of our nation at risk."
  • Ryan Clary, Executive Director of the National Viral Hepatitis Roundtable (NVHR): "President Trump’s assault on the health care system through his unconscionable cuts to Medicaid and other vital safety net programs will cause severe harm to people living with and at risk for hepatitis B and C. If enacted, the result will be continued alarming increases in hepatitis B and C infections, high numbers of individuals unaware of their status, and needless death and suffering due to lack of access to care and treatment. NVHR calls on Congress to reject this budget immediately and work together to pass an appropriations bill that expands access to quality health care for all and increases badly needed funding for the Division of Viral Hepatitis at CDC."
  • Murray C. Penner, Executive Director of the National Alliance of State & Territorial AIDS Directors (NASTAD): "Together we will fight these cuts at every stage of the appropriations process. We need to protect these programs that provide life-saving treatment for those living with HIV and work to prevent the spread of HIV and STDs. We trust that Congress will agree and recognize that these cuts are harmful, short-sighted, and will damage our nation's public health infrastructure."
  • Edward Hamilton, Executive Director of the ADAP Educational Initiative: "The administration’s proposed budget cuts across multiple programs will set back the gains that have been made in domestic and worldwide HIV epidemics 20 years. With the proposed changes in Medicaid and the Affordable Care Act, ADAPs nationwide will collapse due to the unprecedented strains on their budgets from rising drug costs coupled with forecasted increased premiums."
People living with HIV/AIDS, as well as viral hepatitis and other chronic conditions, don't deserve to have a bullseye on them. Trump's proposed budget would fail our nation's most vulnerable and neediest people, and as such, Congress should ignore it.
Bullseye target with arrows in the center
Photo Source: GalleryHip.com
The President's budget can be viewed online at https://www.whitehouse.gov/omb/budget/.

Thursday, April 20, 2017

Linkages to Care - Plugging the Treatment Gap: Navigating Patient Assistance Programs

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

In the United States, everyone hates how insurance companies "stick" it to consumers. There is pretty much universal agreement that the cost of prescription drugs are too high. There is also near consensus that the marketplace plans under the Affordable Care Act ("ACA") have caused a lot of headaches for patients with chronic conditions  including HIV/AIDS  especially with respect to the high tier drug plans. It is no wonder that so many cracks exist within the current healthcare framework. Fortunately, there also exist patient assistance programs ("PAPs") designed to plug the treatment gaps for these patients. PAPs serve as key linkages to care...and treatment!

According to PatientAssistance.com, "Commonly referred to as PAPs, Patient Assistance Programs are services offered by pharmaceutical companies for those who cannot afford their medication. Patient assistance programs are available to low-income individuals or families who are under-insured or uninsured and are provided to those who meet the eligibility guidelines. Assistance may range from reduced cost of drugs to free medicine. Each drug that a company offers will have its own unique program and may even have a different eligibility requirement than the other drugs they offer. As there is no unified standard of designation for these programs, you may also see them referred to as medication assistance programs, indigent drug programs, and charitable drug programs."[1]

Pharmacist standing in front of the pharmacy with prescriptions.
Photo Source: MedicineCoupons.net
PAPs are vitally important to patients living with chronic conditions. They not only improve access to care and treatment, but they also save consumers money and reduce lost productivity. They also benefit the drug manufacturers because PAPs keep patients (would-be consumers) in treatment. The data shared by the Partnership for Prescription Assistance ("PPA") — which connects qualifying patients with the assistance program that’s right for them — is mind-blowing.

Celebrating its 12-year anniversary, PPA recently reported that its website is visited by over 75,000 consumers per month and makes available information on more than 475 patient assistance programs. It also offers a database of nearly 10,000 free or low-cost health care clinics across the country. Over 10 million consumers have been helped since the program's inception.[2]

Aside from the resources made available to consumers directly from the drug manufacturers, there also exists other patient-centric organizations designed to assist patients with prescriptions, discount drug cards, and other patient resources. Just to name a few, they include the Patient Access Network Foundation ("PAN"), Patient Advocate Foundation ("PAF"), and NeedyMeds. Each of these organizations serve as vital linkages to care for social workers, case managers, and allied health professionals assisting patients. These organizations also each partner with the ADAP Advocacy Association.

In an effort to raise awareness about patient assistance program and how they serve people living with HIV/AIDS and/or viral hepatitis, we will host an educational training webinar on May 31, 2017. The webinar, "Plugging the Treatment Gap: Navigating Patient Assistance Program," will showcase important information about these patient-centric PAPs. It will provide webinar attendees with a greater understanding about patient assistance programs, tools for how to navigate patient assistance programs to best assist patient needs, strategies for better seamless delivery of health-related care and treatment, and useful resources and tools to plug the treatment gap.

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.


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[1] PatientAssistance.com (2014); The Catalyst; What are Patient Assistance Programs?; PatientAssistance.com, Inc. Retrieved from https://www.patientassistance.com/faq.html.
[2] Mooney, Hannah (2017, April 5); 12 years of the Partnership of Prescription Assistance; Pharmaceutical Research and Manufacturers of America®. Retrieved from http://catalyst.phrma.org/12-years-of-the-partnership-of-prescription-assistance.