Thursday, February 16, 2017

Get Ready to "SYNC" to Better Coordinate HIV, HCV, and LGBT Health

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

The ADAP Advocacy Association has collaborated with HealthHIV – which is one of the most respected national HIV organizations – numerous times over the last 5 years to promote access to care and treatment-related issues for people living with HIV/AIDS. This year, we're proud to promote HealthHIV's National Conference for HIV, HCV, and LGBT Health – or as its commonly called: SYNChronicity (SYNC 2017). SYNC 2017 is slated for April 24th-25th, in Arlington, Virginia, at the Renaissance Arlington Capital View Hotel.

SYNChronicity 2017: The National Conference on HIV, HCV, and LGBT Health. April 24-25, 2017. Renaissance Arlington Capital View Hotel. Arlington, VA.

With the rapid changes and challenges in the health care sector, the need to come together and "SYNC" on pressing issues from access to delivery is greater than ever. SYNC 2017 participants will receive training on a variety of HIV, HCV and LGBT-related health topics, and have the unique opportunity to engage with clinicians, service providers, government officials, community-based organization leaders, advocates, and others. Together they will SYNC systems, data, programs, models, interventions and policies to generate targeted solutions and approaches within a dynamic health care environment. Continuing education credits will be offered.

The agenda is expanded to include LGBT health with the National Coalition for LGBT Health co-hosting SYNC 2017. It will feature five (5) plenary sessions and five (5) breakout tracks —Preventative Health, MSM of Color Health, HCV Health, LGBT Health, and Systems Health. Each track will feature three (3) sessions. Various educational offerings will be provided following the conference via webinars and an app with available resources—keeping participants synched throughout the year.

Early registrants qualify for discounts, and a small number of SYNC 2017 scholarships are available. Complete information and registration is available at

For more information, contact Terrence Calhoun, Meetings & Conferences Manager, by email at or by phone at (202) 507-4723.


HealthHIV and are teaming up to offer a Social Media Lab during the conference. It’s THE place to bring your digital communication questions, big or small. Come in to learn how to set goals for your social media efforts and then measure impact. Do you want to learn what others in the community have done? Looking at how Twitter, Instagram or Snapchat could fit into your communications planning? Plan to visit the lab, and stay tuned for more details in upcoming conference e-mails.

Thursday, February 9, 2017

California has an ADAP Problem

By: Marcus J. Hopkins, Blogger

A contentious switch in contractors approved by the California Department of Health’s Office of AIDS (CDPH/OA) in 2016 has had several negative consequences, including two lawsuits from the previous contractor, lost applications, dropped coverage, a broken application system, and wrongly denied coverage for California ADAP clients. In other words, it is a complete mess in California.

The AIDS Drug Assistance Program (ADAP), Part B of the Ryan White CARE Act (RWCA) is designed to be the “payer of last resort” for patients living with HIV/AIDS whose incomes fall near enough to the Federal Poverty Level (FPL) to make affording the cost of care prohibitive, if not entirely unaffordable. As such, ADAP clients come to rely upon the uninterrupted delivery of those services in order to effectively treat their HIV infection, address co-morbidities, and achieve and maintain the viral suppression that makes transmission of the virus highly unlikely. By those measures the state of California has abjectly failed the charges whose health the ADAP program was intended to address.

California Department of Public Health (CDPH)

The process that resulted in California’s dereliction of duty began in October 2015, when the initial Request for Proposal Process (RFP) was sent out. The initial RFP followed state guidelines using a 1,000-point allocation system to award the bid to contractors. Consistent with government regulations, the actual monetary bid for the contract (“Cost Calculation”) was weighted at 75% (750 points) and “Technical Calculation” requirements were weighted at 25% (250 points), with a contract term of three years with two one-year extensions for a total of a five-year contract (Hews, 2016).

Using this state-mandated RFP, the then-existing contractor, Ramsell Corp (Oakland, CA) submitted a bid of $900,000 per year, with no increases over the five-year period, for a total of $4.5 million for the Enrollment Benefits Management (EMB) part of the program – the process where clients apply for coverage and maintain enrollment in the program. A competing bid was submitted by Michigan-based A.J. Boggs & Co., Inc.: $4,699,585 for the first year, $2,212,563 for the second, $2,208,767 for the third, $2,211,532 for the fourth, and $2,235,012 for the fifth and final year, totaling $13,567,459 – a bid roughly $9.067 million higher than Ramsell’s (Hews).

Under the terms of the RFP, point allocation to the lowest bidder – Ramsell – would have been 750 points, while Boggs would have received 296 points, using the state-mandated formula. That was the case, until CDPH/AO Procurement Officer, Jeffrey Mapes, changed the terms of the RFP on December 03, 2015, reversing the calculations so that the Technical Calculation became weighted 75% and the Cost Calculation, weighted by 25% (Hews). Mapes’ actions, along with simple math miscalculations, led the Boggs being awarded the new contract on March 04, 2016.  Ramsell, unaware of these changes and miscalculations, submitted a Freedom of Information Act (FOIA) request for all documents related to the Boggs bid – a request whose fulfilment was delayed and incomplete. 

Realizing the errors in the process, Ramsell submitted a protest on April 06, 2016, from which the following excerpt comes:
We are concerned that the amount of time that has been allotted for system beta testing and enrollment worker training is not adequate. The Office of AIDS has notified us that the new system is still being developed, beta testing has not yet begun, and enrollment worker training will not begin until just weeks before the July 1st transition.  Further, the system is transitioning from one to three contractors which will require additional coordination to effectively serve clients. In order to ensure a seamless transition, we believe additional time is necessary to adequately beta test the new system, train enrollment workers, and ensure time for feedback on what works properly and what needs improvement (Otiko, 2016).
In June 2016, Ramsell Corp filed two separate suits related to the EBM and the Pharmacy Benefits Management (PBM) contract awarded to Magellan Rx Management, LLC. The EBM suit alleges that:
…after Ramsell complained about major defects in the unfair procurement, CDPH cancelled the award to Boggs, and then gave them an illegal, sole-sourced contract only days later in violation of the requirements of the State Contracting Manual. The lawsuit also notes that the Boggs’ bid was about three times higher ($9 million more) than the Ramsell bid (Allen & Barajas, 2016).
The PBM suit alleges that:
…in procuring the new contracts, CDPH: (1) failed to follow its own rules as set forth in the Request for Proposals (RFP); and (2) conducted the procurement in a biased manner that was slanted in favor of the out-of-state companies (Allen & Barajas).
Despite these lawsuits being filed, CDPH/OA continued the transition to the three new vendors, which also included Pool Administrators Inc. (which covered the Health Insurance Premium Payments (OA-HIPP) and Medicare Part D premium payment programs), effective July 01, 2016 (Grimes, 2016). Since that transition occurred, ADAP clients, healthcare providers, clinics, pharmacies, and AIDS Service Organizations (ASOs) have experienced numerous problems accessing coverage.

Clients have been turned away at pharmacies, forced to postpone medical procedures, and some have been dropped from the program, altogether (Gorman, 2017). Additional complaints from patients and caseworkers allege that reimbursement claims have been repeatedly rejected (Allday, 2017) and patients have been dropped from the health insurance because ADAP failed to send premium payments to the correct address (Gorman). Dr. Karen Smith, director of California’s Public Health Department, stated in a letter to state Senator Scott Wiener (D-San Francisco) that: 
Shortly after [the department switched to new contractors in July 2016], …CDPH received a letter from constituents expressing concerns that there were issues for some clients receiving medications.  …As you note, the ADAP portal was unexpectedly unavailable for ADAP enrollment worker and client use as of November 29, 2016, due to information security vulnerabilities in the system. …To ensure uninterrupted client access to medications, we have extended client eligibility to their next reenrollment or recertification date occurring after June 30, 2017 (Hemmelgarn, 2017). 

Photo of California State Senator Scott Wiener
California State Senator Senator Scott Wiener; Gloss Magazine

Dr. Smith noted that her agency identified two separate breaches of information, and that impacted clients were notified. Those breaches, however, led to the online portal, where patients could register, re-enroll, and re-certify, being taken offline indefinitely on November 29, 2016. As of January 23, 2017 – just seven days short of the January 30 extension deadline – that online portal has not been replaced. This failure on the part of Boggs forced patients and caseworkers to register for ADAP by fax – a process that took weeks, due to a shortage of both fax machines and customer service workers to handle the load (Allday).

In response to patients being unable to access pharmacy services due to complications with PBM contractor, Magellan, the staff at Magellan were authorized by the state 
…to provide real-time, 24 hours a day, seven days a week authorizations to pharmacies for a 30-day supply of medications for ADAP clients with active eligibility who experience access issues at the pharmacy (Hemmelgarn). 
While this step is a nice quarter-way measure to ensure that active patients – those who have not been erroneously dropped or unable to enroll or certify – can gain access to their lifesaving HIV medications, it in no way serves as a long-term solution to address the myriad disasters that this ill-advised contract switch has created. For those patients, providers, and caseworkers who have been unable to successfully register clients, process claims, pay premiums, or be successfully reimbursed, this disastrous transition is entirely unacceptable.

Further frustrating already harried caseworkers and providers is that this transition from one California-based, minority-owned contractor (Ramsell) to three out-of-state contractors, one of which is inexperienced in the arena, could and should have been entirely avoided, had the CDPH/OA complied with the state-mandated RFP process and properly calculated the points, even within the new calculation. That Ramsell Corp, a company that had successfully provided services to California’s ADAP program for nearly twenty years, was summarily dismissed and their bids rejected in what appears to be retaliation for filing a formal protest in response to the procurement process is foolish behavior on the part of the CDPH/OA.

CDPH/OA’s failure to follow even the most basic statutes indicates the need for a new Procurement Officer, as Jeffrey Mapes’ unexplained and potentially illegal (Hews) actions indicates that he is unfit for the position. California’s patients deserve better, and until there is a permanent fix in place, it is incumbent upon all California residents, advocates, caseworkers, and providers to keep the pressure on the CDPH/OA.

According to sources, the Health Resources & Services Administration (HRSA) at the U.S. Department of Health & Human Services is aware of the situation and monitoring it.


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, January 27, 2017

Despite Treatment Improvements, Patients Remain Concerned about Lipo

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

In 2016, a lot of attention was devoted to raising awareness about lipodystrophy by the ADAP Advocacy Association — including blogs, webinars, and public comment. Whereas some advocates might see this effort as inconsequential, or even trivial considering the larger ongoing debate about access to care and treatment, it isn't either for the patients living with the condition. HIV-related lipodystrophy is very real, and its impact on the patients living with the condition shouldn't be discounted. In fact, raising awareness about lipodystrophy and treatment for the condition is consistent with our mission to improve access to care for persons living with HIV/AIDS.

HIV-related lipodystrophy can manifest itself as fat loss or fat buildup or both. It isn't uncommon for people living with HIV-infection to express concern about developing facial wasting, belly fat, lipomas, or the dreaded "buffalo hump" on the back of the neck.

Photo of man living with HIV-related lipodystrophy
Photo Source: Boston Globe

Lipodystrophy can also contribute to certain co-morbidities and health risks, such as too much fat gain in the abdominal cavity increasing the risk of heart attack and diabetes.[1] There are also psychological effects, such as depression, feeling socially isolated, and suffering from low self-esteem.[2]

According to the National Alliance of State & Territorial AIDS Directors' (NASTAD) 2016 National ADAP Monitoring Project Annual Report, approximately 50% of clients on the AIDS Drug Assistance Program (ADAP) are age 45 or older.[3] It is safe to assume that many of these ADAP clients are long term survivors, who probably were prescribed some of the older, more toxic antiretroviral medications. Many of these medication, in fact, have been attributed to HIV-related lipodystrophy.

"HIV long-term survivors are primarily impacted by lipodystrophy because it was a side effect of several of the earlier treatments," said Tez Anderson, founder Let’s Kick ASS. "Lipodystrophy is more than cosmetic. Exacerbated by body shape changes, such as facial wasting or the appearance of a distended stomach associated with excess visceral adipose tissue (VAT) is associated with a variety of health concerns, like diabetes and cardiovascular disease."

According to Anderson, lipodystrophy may increase the risk for comorbidities and may worsen a person’s quality of life and body self-image. "Too many HIV long-term survivors, lipodystrophy is like battle scars from decades of living with HIV. Talking to your doctor about it is important," he argued.

Robert Reed, who is 55 years old and HIV-positive for nearly half of his life, summarized how lipodystrophy impacted his life: "I was in very severe depression and refused to leave my house (unless for doctor's appointments) or go anywhere, until last year's ADAP Advocacy Association annual conference in Washington, DC. Lipodystrophy and the subsequent fear someone may say something about my weight led me to live in isolation for eight long years. Fortunately, I'm now on treatment for the condition."

People newly diagnosed with HIV-infection are also concerned about lipodystrophy, evidenced by a recent submission to's "Ask the Experts" forum:[4]
"Dear Dr. Pierone;
If someone started HAART today with one of the 5 recommended first line regimens, and he did everything else by the book ( stay fit, eat healthy, keep his total cholesterol, HDL, LDL, triglycerides and glucose levels within normal limits), what would be the likelihood (in a rough percentage figure, if possible) that he would develop lipodystrophy after 15-20 years on therapy?
Looking forward to your answer. Thanks a lot for you input, John"
The exact cause of lipodystrophy is unknown. It is estimated that between 10-30% of patients will develop the condition. For years, there's been a common misconception that this condition is just a physical cosmetic issue that is a side effect of earlier HIV treatments — something that must be accepted as a reality of now living longer with HIV-infection. Recent research dispels that myth so that even with newer antiretroviral medications this condition continues to exist. Thus, we will continue our advocacy efforts in 2017 on HIV-related lipodystrophy.

Read our related blogs on this topic:

[1] National Institutes of Health (NIH);; "Side Effects of HIV Medicines"; 2016.
[2] POZ Magazine; "Changes to Your Face and Body (Lipodystrophy & Wasting)"; February 14, 2016.
[3] National Alliance of State & Territorial AIDS Directors (NASTAD); "2016 National ADAP Monitoring Project Annual Report"; 2016; page 19.
[4]; Ask The Experts; "Current Regimens and Lipo"; October16, 2016.

Thursday, January 19, 2017

Social Workers & HIV Community Resources

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

The ADAP Advocacy Association prides itself on bringing together ALL stakeholders concerned about improving access to care and treatment for people living with HIV/AIDS, namely through the AIDS Drug Assistance Program (ADAP). To that end, one of the most important — and arguably most under appreciated — stakeholder groups in this fight are social workers. Social workers specializing in HIV/AIDS-related supports and services often facilitate critical linkages to care for their patients.

The National HIV/AIDS Strategy (NHAS) recognizes the critical role being played by social workers because they are uniquely positioned to integrate all facets of the care continuum. In fact, many of the NHAS' key indicators cannot be achieved without social workers on the front lines — mainly increasing the percentage of persons with diagnosed HIV infection who are retained in HIV medical care to at least 90 percent, and reducing the percentage of persons in HIV medical care who are homeless to no more than 5 percent.[1]

Since the dawn of the epidemic, social workers have made the difference between life and death for countless people living with the disease. In fact, Michael Shernoff, MSW summarized it best in 1990 when he penned the following:

"This profession can be justly proud of the often pioneering work done by social workers from the onset of the AIDS health crisis in developing psychosocial services of singular diversity and effectiveness that reach out to people infected and affected by HIV. Even before the significance of HIV was known and complete knowledge of the modes of transmission was verified, social workers began to make important contributions to all professionals' understanding of AIDS."[2]

Linkages to care characterizes where social workers fit within the care continuum.We need to be doing more to support their efforts, too.

The premier event for social workers specializing in the HIV/AIDS treatment area is the National Conference on Social Work and HIV/AIDS. In fact, on May 25—28 in Atlanta, Georgia, social workers will convene annually for the 29th time to participate in discussions focusing on "Ending HIV/AIDS through Social Justice: Health Equity for All!" The Boston College School of Social Work sponsors the conference.

Photo of the Atlanta skyline with the words, "Save The Date: May 25-28,2017"
Photo Source: Collaborative Solutions, LLC

The ADAP Advocacy Association for the last several years has convened its ADAP Regional Summit in the South, in order to call attention to the epidemic's disproportionate impact on the region. We're excited to see that the National Conference on Social Work and HIV/AIDS is convening in the South for that very same reason. According to the conference website, "...the Southern region of the U.S. is experiencing an unprecedented increase in HIV cases; which is why it is fitting for us to convene this year’s conference in the heart of the South."

In 1990, Shernoff lamented the social injustice faced by people living with HIV/AIDS during the previous decade. Nearly twenty years later, his words still ring true evidenced by the chosen theme for the 29th Annual National Conference on Social Work and HIV/AIDS. No matter how much things change, they stay the same.

Learn more about the conference online at Questions? Contact them at

Additional resources include:
[1]; U.S. Department of Health & Human Services; "National AIDS Strategy"; 2017.
[2] Shernoff, Michael; The Body Dot Com; "Why Every Social Worker Should Be Challenged by AIDS"; 1990. 

Thursday, January 12, 2017

10 Years of Accomplishment, Advocacy & Access to Care

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

It is hard to believe it is true, but 2017 marks the 10-year anniversary for the ADAP Advocacy Association. What started out as an idea by our founder and co-chair, William "Bill" Arnold, and a small start-up grant from Ramsell Corporation, has bloomed into a national voice for people living with HIV/AIDS who rely on the AIDS Drug Assistance Program (ADAP). Throughout these ten years one thing has remained true, that the voice of people living with HIV/AIDS shall always be at the table and the center of the discussion.

One of our greatest accomplishments was launching the ADAP Directory, which was initially made possible by generous grants from AbbVie, Merck, and Walgreens. The groundbreaking approach provides a one-stop online resource center for the latest ADAP information for better decision-making for HIV/AIDS care, improved quality of HIV/AIDS information, and assistance for advocates and care providers. In 2016, over 21,000 users visited the ADAP Directory. Additionally, last year we added the "ADAP Eligibility Calculator" as a new user-friendly, patient-centric tool — powered by Pill Pack — designed to provide additional information about possible ADAP eligibility.

The ADAP Directory

Years earlier during the ADAP waiting list crisis, we hosted an Emergency ADAP Summit in Fort Lauderdale just as the Florida ADAP was on the verge of kicking nearly 3,000 patients off of the program. The event embodied activism in motion because patients were speaking out against the growing waiting lists. Behind the scenes the former President & CEO of the Heinz Family Philanthropies, Jeffrey Lewis, was bringing together the necessary players to launch the Welvista Solution — which provided life-saving medications to literally thousands of people living with HIV/AIDS on ADAP waiting lists. We were honored to have played a role in making it happen.

Advocates protesting ADAP waiting lists.

That same year, we released Public Service Announcements on ADAPs to raise awareness about ongoing the ADAP waiting list crisis. The 60-second PSA aired over six weeks from February 21, 2011, to April 3, 2011, over 210 media outlets nationwide. The PSAs were produced by Neil Romano of The Romano Group, LLC – who worked on campaigns such as "Just Say No" and "America Responds to AIDS."

Public Service Announcement on ADAP showing patient with the words, "teammate & friend."

2017 is a new year, and with it will undoubtably come new challenges. There remains much uncertainty over the incoming Trump Administration and its implications for the Affordable Care Act and the Ryan White CARE Act. For now, we are continuing to focus on what has been our stable approach to advocacy: the patients voice! Our 10th Annual Conference — which is slated for September 22-23, 2017 in Washington, DC — is being themed, "Unchartered Water: AIDS Drug Assistance Programs in the Age of Trump." In addition, possible collaborative projects are being planned with the AIDS Healthcare Foundation (AHF), Community Access National Network (CANN), HealthHIV and the Professional Association of Social Workers in HIV & AIDS (PASWHA).

This year, two special education projects are planned to improve access to care among transgender men and women living with HIV/AIDS, as well as linkages to care for incarcerated (and formerly incarcerated) populations. As in years past our Scholarship Fund will ensure that the patients voice remains front and center, and this objective couldn't be achieved without the fund's two chief funders, CANN and Housing Works, as well as the many other supporters.

Access to care has been at the center of our mission, and it will continue to do so. Adherence is key to HIV treatment working, thus promoting a robust AIDS Drug Assistance Program is vital to combatting the disease and ending the epidemic. Though our focus is almost exclusively on ADAPs, we will continue to work with advocates, community, health care, government, patients, pharmaceutical companies, and other stakeholders to raise awareness, offer patient educational program, and foster greater community collaboration.

In closing, we would like to thank our funders because our 10th anniversary couldn't happen without their past and ongoing support. Since 2007, our funders have included: Abbott Laboratories, AbbVie, AIDS Alabama, AIDS Drugs Online, AIDS Healthcare Foundation, Alibi Wilton Manors, American Association for Homecare, Audio Visuals & Computer Services, Bender Consulting Services, Biotechnology Industry Organization, Bristol-Myers Squibb, Broward House, Community (A Walgreens Pharmacy), Community Access National Network, Dab the AIDS Bear Project, DC's Most Fabulous Magazine, Diplomat Specialty Pharmacy, Duane Reade Pharmacy (A Walgreens Pharmacy), EHiM, EMD Serono, Elwyn Specialty Care, Flowers Heritage Foundation, Forthright Strategies, HealthHIV, HMS, Housing Works, Genetech,, Gilead Sciences, Great Lakes ADA Center, Janssen Therapeutics, Job Accommodation Network, Justin's Cafe, Kellari, Kimptons Hotels & Restaurants, Macsata-Kornegay Group, MedData Services, Merck, MOMS Pharmacy, Morgali Films, Mylan Pharmaceuticals, Napo Pharmaceuticals, Number 9, O.B. Sweet, OraSure Technologies, Patient Access Network Foundation, Patient Advocate Foundation, Pharmaceutical Research and Manufacturers of America, Philadelphia FIGHT, Pill Pack, Public Sector Solutions, Ramsell Corporation, The AIDS Institute, Theratechnologies, Social Security Administration's Ticket-to-Work, Southern AIDS Coalition, Southwest Airlines, Starbucks, SunTrust Bank, Turing Pharmaceuticals, Vertex Pharmaceuticals, ViiV Healthcare, Walgreens, We Movement, Wells Fargo, Women's Institute For A Secure Retirement, and World AIDS Institute.

But most of all, we would like to thank the thousands of individual supporters who joined our organization, attended our educational events, and/or donated to us. We couldn't have reached 10 years without you!

Wednesday, December 7, 2016

AIDS Drug Assistance Programs in the Age of Trump's "Make America Great Again"

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

The ADAP Advocacy Association does not engage in any political activities, political campaigns, ballot initiatives, or federal lobbying activities for that matter. Our purpose is strictly to raise awareness, offer patient educational programs, and foster greater community collaboration. That said, many stakeholders in our circles are concerned about the forthcoming inauguration of the 45th President of the United States, and the implications on the future of the AIDS Drug Assistance Programs ("ADAP"), as well as the "public safety net" generally.

On World AIDS Day, our organization issued a strong statement to the incoming president. Turning back the clock is not an option.

Speaking about my own personal politics in my role as the CEO of the ADAP Advocacy Association is something that I do rarely, because I learned long ago not to allow my own personal politics to influence my responsibilities to the organization, or the people represented by the organization. In full disclosure though, I was part of the #NeverTrump and #StopTrump movements during the Republican presidential primary. I had concerns about Donald J. Trump when he was a candidate in the Republican primary, and those concerns persisted during the general election. Furthermore, I continue to have concerns about him now that he is the President-Elect. But...I'm willing to heed the words from Hillary Clinton delivered during her concession speech, "We owe him an open mind and a chance to lead."[1]

But another politician (whose name I will not say) rationally said in 1986, "Trust, but verify."[2]

Photo of Donald J. Trump
Photo Source: Associated Press

In other words, I'm at the intersection between fear and hope. It is not a settling place because there are so many unknown pieces at play.

Ever since Trump's electoral win on November 8th, however, he has promised to repeal (and replace) the Affordable Care Act ("ACA") and thereby remove protections afforded to people living with HIV/AIDS; he has tapped a staunch anti-ACA congressman to lead the U.S. Department of Health & Human Services ("HHS") and thereby kill Medicaid expansion; he has deemed fit to select a man with no knowledge about housing policy to lead the U.S. Department of Housing & Urban Development ("HUD") and thereby potentially threatening important housing programs for our community (namely the Housing Opportunities for People with AIDS program, or HOPWA); and yet still he has not once uttered the words "HIV" or "AIDS since coming down that escalator in Trump Tower on June 16, 2015. The aforementioned are all red flags, but they don't even address his selection of the man who will be a heartbeat away from the Oval Office.[3] In other words, it stands to reason that the HIV/AIDS community is anxious about what lies ahead.

Ironically, patients  including people living with HIV/AIDS — may have something to be hopeful about because in an interview with TIME Magazine, President-Elect Trump put drug makers on notice over the rising cost of prescription drug prices. It was a warning to Wall Street that he repeated throughout the campaign trail.[4]

Trust, but verify! Right? Well...

It is incumbent upon the ADAP Advocacy Association, and its many various stakeholders to remain vigilant — especially during the Trump Administration's first 100 days in office, and the first year in office. It is important to remember that "Checks and Balances" remain, which makes reinforcing existing relationships with Members of Congress — and cultivating new ones  so important! And the latter has to be done with BOTH political parties, and not simply the one that you support. Sustain constant contact with the career civil servants working at HHS and HUD, among the many other federal departments and agencies. Engage at the state level by keeping open the lines of communication with governors and state legislators. But it is also equally important for stakeholders to maintain their composure during this process.

One thing is for certain...we have our work cut out for us! But remember that our community is strong, and we will persevere!

[1] Vox, "Hillary Clinton’s concession speech full transcript: 2016 presidential election," November 9, 2016; available online at
[2] Wikipedia, "Trust but verify," November 26, 2016; available online at,_but_verify
[3] Kaczynski, Andrew, BuzzFeed, "Here Is Mike Pence’s Questionable 2000 Proposal On HIV/AIDS Funding," July 14, 2016; available online at
[4] Egan, Matt, CNN Money, "Trump warns Wall Street: I'm going to cut drug prices," December 7, 2016; available online at 

Friday, October 28, 2016

Why HIV Medical Treatment Guidelines Matter

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

As with all chronic diseases and conditions the approved medical treatment guidelines serve as an important marker, not only for patients and the medical professionals who treat them, but also the payors. This is certainly no different with HIV/AIDS. That is why the ADAP Advocacy Association is calling on the Health Resources and Services Administration ("HRSA") at the U.S. Department of Health & Human Services to update its treatment guidelines for HIV-associated lipodystrophy. HRSA's current guidelines need to correct a statement regarding growth hormone-releasing factor, because it does not accurately reflect the available treatment to patients suffering from lipodystrophy disease.

According to WebMD, "Lipodystrophy is a problem with the way the body produces, uses, and stores fat. It is also called fat redistribution. Since the widespread use of antiretroviral therapy began, the numbers of HIV-positive people with lipodystrophy has increased. Today, lipodystrophy occurs in 30% to 50% of people who are infected with HIV (human immunodeficiency virus)."[1]

The ADAP Advocacy Association has increasingly supported educational initiatives aimed at tackling HIV-related co-mordibities, as well as HIV-related stigma. Combatting lipodystrophy falls under both categories. Researchers have concluded lipodystrophy is associated with increased rates of hypertension, diabetes, and lipids for patients experiencing lipodystrophy. Furthermore, long term psychological affects are present among patients, especially among those patients age 65 and older.[2]

Lipodystrophy is more than a cosmetic issue, especially for the HIV-positive patients living with the disease. For example, people living with HIV often believe the doughy fat around their midsection can be addressed by a healthy diet and exercise alone. But diet and exercise may not be enough to combat the challenges associated with visceral adipose tissue ("VAT"). The "Don’t Take VAT" website – – includes fact sheets about VAT and healthy living with HIV, as well as a video that provides a deeper look at VAT and tips about what to ask your doctor.

[Editor's Note: Read our related blog, "HIV-Related Belly Fat: More Than Just an Appearance Issue"]

But more needs to be done, frankly!

In 2010, the U.S. Food & Drug Administration ("FDA") approved Tesamorelin (trade name Egrifta) as treatment for lipodystrophy. Whereas some private health insurance plans cover this treatment option, public payors mostly don't cover it. Only three State AIDS Drug Assistance Programs ("ADAP") include Tesamorelin on its approved drug formulary, including Minnesota (though it requires a prior authorization), New Jersey, and Washington State. Not a single Medicaid program includes Tesamorelin on its Preferred Drug List ("PDL"). By restricting access to an FDA-approved treatment represents a disservice to the patients suffering from HIV-associated lipodystrophy.

Ironically, some states cite "cost" as the prohibitive factor for the reason lipodystrophy treatment isn't added to their approved drug formulary or PDL. Yet, other costly (and still needed) supports and services are covered -- such as counseling, physical therapy, and in some cases, surgery.

DENIED: Treatment for Lipodystrophy
Photo Source: GLAD
That is why HRSA should update its "Guide for HIV/AIDS Clinical Care." It would provide better guidance for ADAPs nationwide seeking the necessary budgetary justification for adding Tesamorelin to its approved drug formulary. It is the only treatment available to these patients, and they are crying out for help! To read the draft letter to HRSA requesting an update to the medical treatment guidelines, CLICK HERE.

This effort shouldn't be interpreted as an endorsement of the particular product, Tesamorelin. The simple fact is Tesamorelin is the only product on the market approved by the FDA used in the treatment of HIV-associated lipodystrophy. Talk to patients who are living with HIV-associated lipodystrophy, and listen to their stories about the physical discomfort associated with the disease, or the stigma that they encounter on a daily basis living with the physical disformity caused by the disease.

Massachusetts is already leading the way to improve access to care and treatment for people living with HIV-associated lipodystrophy. The Treat Lipodystrophy Coalition fought tirelessly for the law to require insurance coverage for treatment of a debilitating and disfiguring side effect of HIV medications. Patients living with HIV-associated lipodystrophy are now demanding the same be done with public payors, such as ADAP and Medicaid.

Summarized Carl Sciortino, executive director for the AIDS Action Committee, and former representative in the Massachusetts Legislature who introduced the aforementioned legislation: "Some of our long-term survivors carrying the physical scars of earlier life-saving treatments have been denied the dignity and medical treatment they are entitled to for far too long. Lipodystrophy affects our veterans, and as a country we have effectively turned our backs on their need to treat their epidemic-inflicted wounds. I'm proud of our step forward in providing insurance coverage in Massachusetts, and I'm grateful for any interest it sparks in providing care to people living with HIV across the country."

To endorse this effort by adding your organization to the ADAP Advocacy Association's national sign-on letter, CLICK HERE. The deadline for signing on to the letter is COB on Monday, November 7, 2016.

[1] WebMD, "Lipodystrophy and HIV," 2016; available online at
[2] Mascolini, Mark, "HIV Drug Therapy, Glasgow Oct 23-26 2016," NATAP, 2016; available online at