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

Friday, October 7, 2016

How North Carolina Legalized Syringe Exchange Programs

By: Tessie Castillo, Communications and Advocacy Coordinator, North Carolina Harm Reduction Coalition (NCHRC)

In July 2016, North Carolina accomplished what many said could never be done – we legalized syringe exchange programs, which are proven to lower HIV and hepatitis C rates among people who inject drugs.

It took many years of planning and effort, as well as strategic partnerships with a variety of stakeholders to move the needle on this issue. We’d like to share a few of the strategies that worked well so that other advocates hoping to change hearts and minds on HIV prevention and harm reduction issues can use the lessons we have learned.

1. Craft a clear, concise message and choose the right messenger. The message around syringe exchange programs (SEPs) is pretty simple:
  • SEPs lower HIV and hep C for the community;
  • SEPs are a portal to treatment for people who are marginalized from health care and recovery programs; and
  • SEPs lower needle-stick injury to LEOs by 66%.

We hammered home these three points in presentations, OpEds, media interviews, conversations with stakeholders, and everywhere else we could think of. Choosing the messenger required a bit more work. Since law enforcement had been the biggest opponent to syringe exchange programs in previous years, they were the perfect messengers.

We began setting up meetings with Chiefs of Police and Sheriffs, focusing primarily on those who had or wanted to start naloxone programs, since they seemed more sympathetic to nontraditional approaches to problems associated with drug use. After explaining our three points above, the majority (about 90%) of the law enforcement we talked to agreed that SEPs were a good idea. We asked them for a 2-3 sentence quote on why they supported SEPs and compiled all the quotes onto one page, which we presented during every meeting with every legislator over the next few months. This quote sheet was magic. MAGIC. It was the number one thing that took legislators from opposed or squeamish about syringe exchange programs to fully on board. It also neutralized opposition from law enforcement lobby groups, who had previously been vocally opposed to syringe exchange programs.

2. Choose the appropriate legislative sponsor. Legislative sponsors, the people who actually introduce your bill into the House or Senate, are very important. One of the ugly truths of politics is that so many bills go through the legislature per session, legislators don’t have time to read them all. Often, they just look at the bill sponsor. If it is someone they respect and usually agree with, they will vote for the bill. Knowing this, we carefully selected our bill sponsors as people who were from the majority party and trusted among their peers.

3. Create a list of target legislators and convince them to support the bill. Months before the start of session, we sat down with our primary bill sponsor and created a list of legislators who were likely to influence our bill because:
  • They were the chairs of committees the bill would likely go through;
  • They were well-known for legislation on drug/medical issues;
  • They were likely to oppose the bill and others listen to them;
  • They have a lot of influence at the legislature; and/or
  • They have a medical/law enforcement background.

The goal was to have these legislators on our side, or at least not opposed to the bill, prior to the start of session. As mentioned above, legislators tend to follow the votes of other people they respect. If you can find and convince these few influential legislators, you have the votes of a lot of others as well.

After getting a list of target legislators (only about four) from our sponsor, we created strategies to seek their support for the bill. We flooded their newspapers with OpEds and articles in favor of syringe exchange. We sat down with the Chiefs of Police and Sheriffs in their district to get quotes for our quote sheet. We met with their health directors, heads of drug treatment centers and pastors from the larger churches. It was not until we had a robust group of influential constituent supporters that we reached out to the actual legislators. This process took months of work, but it was well worth the effort. We invited the targeted legislators to meetings attended by all the supporters we had cultivated in their districts so that they could hear from their own constituents why SEPs are a good idea. The outcome of the meeting was usually decided before the legislator even walked in the door.

4. After introducing the bill, don’t slack on the leg work. By the time the legislative session actually started, we were in pretty good shape. Our law enforcement quote sheet was growing and working wonders. We had also successfully convinced the majority of our target legislators to support the bill. Once the bill was actually introduced, the rest was leg work – we met with the legislators on every committee that the bill went through to ask them to vote for the bill. We created informational flyers that we passed out to all other legislators. We urged constituents through listserv emails to contact their legislators and ask for their vote. When problems came up and the bill stalled, as it did many times, we kept urging the legislators, especially the sponsors and key supporters, to keep trying and asked our listserv allies to keep making calls. (There is a fine line between being persistent and being pushy, but we tried not the cross that line).

Eventually, the work paid off. In July 2016, Governor McCrory signed the first law legalizing syringe exchange programs in North Carolina. In just two months, over a dozen syringe exchange programs have popped up all over the state and more organizations are coming forward expressing interest in starting one. Hopefully advocates in other states can learn from NC and succeed in their own campaigns to legalize syringe exchange programs.

That’s the bare bones explanation of how we legalized syringe exchange programs in North Carolina. Click here for a more narrative version of the process.

Fact sheets and other materials to help advocate for syringe exchange programs (including the law enforcement quote sheet) are available here:


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 29, 2016

Magnifying How ADAP Provides Treatment For People Living With HIV/AIDS

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

On September 23rd and 24th, "Magnifying How ADAP Provides Treatment For People Living With HIV/AIDS" took center stage at the ADAP Advocacy Association's 9th Annual ADAP Conference in Washington, DC.  The conference convened numerous ADAP stakeholder groups — including patients, service providers, health departments, pharmacies, pharmaceutical companies, and advocacy organizations — to discuss the current and emerging public policy issues confronting the AIDS Drug Assistance Program (ADAP), as well as exchange ideas and develop strategies for effective patient self-advocacy.

The conference kicked off with some exciting news about the organization's flagship program; the ADAP Directory. The ADAP Directory — which was launched in 2014 — takes an innovative approach to linking people living with HIV-infection to the information, resources, medical care, and treatment options. Now, it offers an interactive feature called the ADAP Eligibility Calculator powered by PillPack.

The opening keynote was delivered by Dr. Mike Magee, President of Positive Medicine, who is a longtime friend of the ADAP Advocacy Association (Editor's Note: It was 2007, when Dr. Magee delivered the opening keynote at the organization's first annual conference). His remarks, "Blending Positive Leadership and Advocacy: A Case for Advanced Professionalism," drew heavily from a book published by his son, Michael,  some years earlier, entitled “Emancipating Pragmatism: emerson, jazz, and experimental writing.” Dr. Magee's keynote conveyed several key points. Among them are positive leadership, and islands of common stewardship. To read Dr. Magee's recap of his experience in his blog post at Health Commentary, CLICK HERE.

Tweet to mike magee

The conference offered up seven panel discussions, each playing an important role in magnifying how ADAP provides treatment for people living with HIV/AIDS. The conference leveraged an Oprah-style format designed to promote a “conversation” rather than a traditional presentation-type session; therefore, the panelists were encouraged to speak from the heart rather than using scripted remarks/presentations.

The conference panels included:

  • HIV & Aging: Building a Focus on Healthy Aging for Older Adults Living With HIV/AIDS
  • Affordable Care Act: AIDS Drug Assistance Programs & Qualified Health Plans
  • Affordable Care Act: Marketplace Cost Sharing & Barriers to Healthcare
  • Linkages to Care: Social Workers & HIV Community Resources
  • Linkages to Care: 340B Program & HIV Continuum of Care
  • HIV & Marginalized Communities: Delivering Culturally Competent Care
  • Co-Infection: Integrating HCV Services into HIV Prevention/Care Settings
The conference attendees were provided an abundance of supporting materials, which can be downloaded online here. By the time the conference had concluded there were numerous take-aways that will be orchestrated by the ADAP Advocacy Association over the coming weeks and months.

Thank you to all who supported the conference, presented at it, and most importantly, attended it!

ADAP Advocacy Association 9th Annual Conference

Friday, September 16, 2016

Annual National Monitoring Report on HIV/HCV Co-Infection

By: Marcus J. Hopkins, Project Director, HIV/HCV Co-Infection Watch, Community Access National Network (CANN)

The ADAP Advocacy Association is sponsoring an important community roundtable on September 22nd in Washington, DC, hosted by the Community Access National Network (CANN). The pressing issue at hand: HIV/HCV Co-Infection. The First Annual National Monitoring Report on HIV/HCV Co-Infection will present findings on the state of human immunodeficiency virus (HIV) and hepatitis C (HCV) co-infection in the United States, including a summary of the HIV/HCV Co-Infection Watch, as well as the HealthHIV/HealthHCV recently published report, State of HCV Care National Survey.

The event will be held at the Pharmaceutical Research and Manufacturers of America (PhRMA) Headquarters, located at 950 F St., NW Suite 300, Washington, DC 20004. It will be held from 3:00 PM – 5:00 PM (EST). Gilead, Merck and Walgreens are also sponsoring this event, along with PhRMA.

While both HIV and HCV are significant health issues on their own, co-infection poses a serious threat to persons living with HIV. Treating HCV in conjunction with HIV can be difficult, as many of the most popular HIV combination therapies (such as Stribild) may have serious drug interactions with some of the components of newer Direct Acting Agents (DAAs) currently available to cure HCV.

Recent spikes in HCV infections related to Injection Drug Use (IDU) have led physicians in affected areas to screen also for HIV. Perhaps the most well-publicized case involved an outbreak in Scott County, Indiana, was caught due to a sharp increase in HCV infections amongst IDUs. The outbreak also led the state’s conservative legislature to approve emergency Harm Reduction measures – namely Syringe Exchanges – in counties designated as having public health emergencies. The sixth such emergency Syringe Exchange will be opening in Clark County, this fall. Clark County, which neighbors Scott County, has seen a 63% increase in fatal drug overdoses since 2013, with 49 confirmed fatal overdoses, and another 20 pending since the beginning of the year (Maher, 2016).

The HIV/HCVCo-Infection Watch released its inaugural Report in January 2015, originally focusing only on HCV drug coverage in AIDS Drug Assistance Programs (ADAPs) and Medicaid programs. Now, nearing the end of its second year in publication, the Watch has expanded to include coverage information for the Veteran’s Affairs (VA), Harm Reduction measures (including Syringe Exchanges) to prevent the spread of infection, and regional trends, which focus on issues of drug coverage, co-infection, and legislative efforts to combat the spread of HCV. Each Report also contains the latest news in HCV science, opioid/heroin addiction, pharmaceutical updates, and HIV/HCV-related news.

HIV/HCV Co-Infection Watch

 HealthHIV’s report on the State of Hepatitis C Care National Survey was released in February 2016, and presents the findings gathered during the survey process. The inaugural survey, conducted in 2015 in conjunction with Medscape, LLC., collected data on both providers and the patient populations they serve, and made policy recommendations and observations related to increasing access to HCV care both outside and within the HIV care continuum.

HealthHCV HCV Care Survey

 While the National Monitoring Report on HIV/HCV Co-Infection event is free to attend, seating is limited. Advanced registration is required, which can be done at the following web address:


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 1, 2016

Californication and the Battle Over Drug Pricing

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

POLITICO reported this week that California's controversial Prop 61, entitled the "California Drug Price Relief Act," is likely to get the green light from voters at the ballot box this November, according to a recent poll. Nearly three quarters (73%) of those polled indicated that they support Prop 61, compared to only 13% who are opposed to it -- with approximately 14% of the survey's respondents remain undecided. The ballot initiative appears to have the strongest support among registered Democrats (77%), but also 70% of registered Republicans and 68% of unaffiliated voters.[1]

Ballot with "Yes" marked
Photo Source: Moyers & Company

According to Californians for Lower Drug Prices, which is supporting the ballot initiative, (verbatim language from the Yes on Prop 61, Californians for Lower Drug Prices, with major funding by AIDS Healthcare Foundation and California Nurses Association PAC) "The Drug Price Relief Act would require the state of California to negotiate with drug companies for drug prices that are no more than is paid for the same drugs by the U.S. Department of Veterans Affairs (DVA).  Unlike Medicare, the VA negotiates for drug prices on behalf of the nearly 22 million veterans it serves, and pays on average 20-24 percent less for medications than other government agencies, and up to 40 percent less than Medicare Part D.  The Drug Price Relief Act empowers the state, as the healthcare buyer for millions of Californians, to negotiate the same or an even better deal for taxpayers, saving the state billions."[2]

The poll was conducted by Tulchin Research, among 800 likely voters conducted from July 21-24, 2016. According to a Tulchin Research memorandum obtained by the ADAP Advocacy Association:

"The survey finds that nearly three-quarters of voters would vote yes in support of Proposition 61 (73% yes with leaners, 66% without leaners) when presented the measure’s title and summary, including four out of 10 (41%) who say they would definitely vote yes, while just 13% of voters would oppose the measure (12% without leaners) and 14 percent are currently undecided."[3]

Prop 61 has been endorsed by a long list of organizations -- including the AIDS Healthcare Foundation (AHF) and the American Association of Retired Persons (AARP) – California Chapter. To view endorsements, go to

But not everyone is behind the ballot initiative. Aside from groups expected to oppose such a measure -- such as the Pharmaceutical Research and Manufacturers of America (PhRMA) -- it is being opposed by some other heavy hitters. Among them; the Veterans of Foreign Wars, the California NAACP, and the California Medical Association. To view opponents to Prop 61, go to

Interestingly enough, some national and state HIV/AIDS organizations are opposing the ballot initiative; and other organizations -- such as Project Inform and the San Francisco AIDS Foundation -- are staying on the sidelines. The chief complaint against it won't actually save the state any money. In fact, "highly uncertain" is how the California Legislative Analyst’s Office characterized the impact of the ballot initiative, should it pass in November.[4]

The state's analysis found, "Even if the initiative were to result in cost savings to the state, it is unclear whether or not lower prices would be realized for consumers. The initiative does not include any provisions that would lower the cost of prescription drugs for consumers who are increasingly having difficulty accessing treatment, both because employers and insurers are passing on more of the cost to employees and consumers, and because more restrictions to access are being placed on higher-cost drugs."[5]

Summarized Eddie Hamilton, with the ADAP Educational Initiative, "The current convulsed, inconsistent system across the country compounded with the widespread conflicts of interest is hurting access more than any state Proposition could ever do. That is what had created the breeding ground for that ballot initiative."

And for now, voters in California are moving in the direction of the "Yes" forces during this contentious battle in the Golden State! Stay tuned...

[1] POLITICO, "New poll shows strong support for landmark drug pricing ballot measure,"  August 2, 2016; available online at
[2] Yes on Prop 61, Californians for Lower Drug Prices, "Californians for Lower Drug Prices Launches TV Ad Campaign," June 7, 2016; available online at
[3] Tulchin Research, "California Statewide Survey Shows Strong Support for Proposition 61, the Ballot Measure to Lower Prices on Prescription Drugs," July 28, 2016.
[4] Hemmelgarn, Seth, The Bay Area Reporter, "Prop 61 targets drug prices," August 25, 2016; available online at
[45 Hemmelgarn, Seth, The Bay Area Reporter, "Prop 61 targets drug prices," August 25, 2016; available online at

Thursday, August 25, 2016

Mandating Treatment for HIV-Related Lipodystrophy: The Massachusetts experience and a call for national action

By: Ben Klein, Senior Attorney and AIDS Law Project Director, GLBTQ Legal Advocates & Defenders

There is a debilitating and disfiguring side effect of early HIV medications that causes profound suffering among our longest-term survivors of the HIV epidemic. For some, it is so severe that they do not leave their homes and become shut-ins, depressed, and suicidal. For others it causes chronic physical pain and structural damage, including spine and neck problems. And for many it is an involuntary public disclosure of HIV, still the most stigmatized health condition in America. Most public and private insurers refuse to cover the simple, inexpensive, and effective medical treatments available to remedy it.

This condition is called lipodystrophy. It is one of the most underappreciated and unattended challenges of the HIV epidemic. Massachusetts just became the first and only state in the nation to mandate insurance coverage for lipodystrophy. And we hope that the experience of the Treat Lipodystrophy Coalition in Massachusetts will become a national model for advocacy and legislation to end this unnecessary suffering.

The word “lipodystrophy” is unfamiliar to many people, even within the LGBT and HIV communities. Lipodystrophy is a consequence of the first wave of HIV medications in the late 1990s, which transformed HIV into a chronic and manageable disease. It is a metabolic disorder characterized by the abnormal distribution of fat in the body. People with lipodystrophy experience a range of disfiguring body shape changes with colloquial names like “buffalo hump” (an abnormal fat pad on the back of the neck) and “horse collar” (abnormal fat growth in the front and side of the neck and under the chin). It also causes severe wasting in the face and limbs. The effects can be devastating.

Several years ago, my organization - GLBTQ Legal Advocates & Defenders (GLAD), a legal group that fights discrimination on the basis of sexual orientation, gender identity and expression, and HIV status - began to hear from people who had been unfairly denied medical care by insurers on the specious grounds that treatment for lipodystrophy is “cosmetic.” It was through representing these individuals in their insurance appeals that I came to fully appreciate the profound physical and psychological harm caused by lipodystrophy – and to understand advocating for treatment as a true life and death matter. What we discovered was that the few people who had the capacity to lawyer up, get letters from physicians and psychologists, file an appeal citing the established medical literature about lipodystrophy, and threaten to sue, were often able to get the medical care they needed. But the very nature of the disease meant that the majority of people suffering from lipodystrophy were unlikely to be able to take on this kind of self-advocacy. It became clear that systemic change was needed.

The path to successful legislation in Massachusetts began with a conversation about the challenge of untreated lipodystrophy with Carl Sciortino, then a state representative and now the Executive Director of the AIDS Action Committee. He first raised the idea of introducing a bill and stepped up to be the original sponsor. At that time, no other legislator had heard of lipodystrophy. Most people in the HIV community, and many physicians treating them, simply assumed that coverage was impossible. Few people even bothered to try.

GLAD formed the Treat Lipodystrophy Coalition, which was made up of people living with HIV, physicians, and HIV advocacy and service organizations. We knew that to have a chance at passing an insurance mandate, we would need to find and present the stories of people whose experience living with untreated lipodystrophy would shock legislators in Massachusetts into understanding this as a critical health care issue. It was a daunting task. The shame and stigma of lipodystrophy is so powerful that many people would not meet with us and still others were not able to come forward publicly.

But with painstaking work, we were able to find a number of courageous individuals who allowed us to share their stories in the form of a book we produced called “Treatment for Lipodystrophy Denied: Sound and Compassionate Healthcare for People with HIV.” Those stories galvanized both legislators and our own community into action. We met a man named John Wallace from South Boston, whose lipodystrophy was so severe that he became hopeless and depressed and never left his home. He told us: “I’ve thought about suicide many times. But it goes against my Catholic faith.” We told the story of Mark S., who described being called “freak” and “monster” just steps from the Massachusetts State House. There is George Hastie, who recounted being denied coverage for a three-pound pad on the back of his neck that resulted in permanent spinal damage. And Andrew Fullem, who described being a “walking advertisement for HIV.”

Our first legislative hearing in March 2014 was a transformative moment. Legislators who had never before heard about lipodystrophy were close to tears. With the storybook and that powerful initial testimony as a springboard, we continued to gain traction throughout 2015 and 2016 - organizing community members, enlisting the support and expertise of respected medical professionals and healthcare agencies, engaging local and statewide media coverage, developing compelling messages and disseminating clear, concise fact sheets to legislators. We had three main messages we hammered away at:

  • Cost is the foremost legislative concern with insurance mandates. We countered by demonstrating that lipodystrophy not only affects a very small number of long-term survivors, but also is a fixed and shrinking population. It is an historic problem. And the treatments, generally liposuction to remove excess fat and facial fillers to remedy wasting, are inexpensive. Here’s a postcard we delivered to all legislators:
1 cent to 10 cents per member per month covers the cost of the treatment for lipodystrophy
  • We always referred to lipodystrophy as a “disease” that requires medical care to counter the fallacy that treatments are “cosmetic.” Since when do we not treat a diagnosed disease? 
  • Refusal to cover lipodystrophy treatments is discrimination. Insurance companies cover restorative procedures for the consequences of other diseases, such as breast reconstruction and testicular replacement for cancer patients. We don’t let insurance companies say that’s cosmetic! Refusing to treat the consequences of lipodystrophy disease is unfair discrimination against people with HIV.

When we began this process, nobody believed we had a chance at passing this bill. We were fortunate to have champions in the legislature, Representative Sarah Peake and Senator Mark Montigny, who took up the cause and pushed for passage. The law will go into effect November 9 (“An Act Relative to HIV-Associated Lipodystrophy Syndrome Treatment,” Chapter 233 of the Acts of 2016).
To be sure, HIV/AIDS advocacy and service organizations have had unrelenting and crucial battles to fight over the decades: access to testing and treatment; prevention, including PrEP and clean needles; discrimination and stigma; and the shameful criminalization statutes that still exist in a majority of states, to name just a few.  But I hope we can all agree that it is intolerable to let our longest term survivors of the HIV epidemic suffer from untreated medication side effects. Here’s hoping that the Massachusetts experience begins a national call to action to address this indefensible insurance discrimination.


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.