What’s Needed to Fix a Vital Drug Discount Program

By: Brandon M. Macsata, CEO, ADAP Advocacy Association & Guy Anthony, Founder & President, Black, Gifted & Whole Foundation

****Reprinted with permission from POZ****

Thirty years ago, when Congress passed the Public Health Service Act, no one could have imagined that section 340B of the law would become the lightning rod that it is today. The little-known provision created a program to help America’s safety net health care providers bring affordable care and discounted medicines to vulnerable, low-income patients. 

Photo Source: POZ | iStock

The initial concept was simple and effective. Pharmaceutical manufacturers provide steeply discounted drugs to hospitals, providers, and clinics that serve uninsured and underinsured patients living with HIV/AIDS, and safety net providers dedicated to reaching the most vulnerable and underserved communities. The support that the 340B program provided to Ryan White Clinics and hemophilia treatment centers was critical in addressing the HIV/AIDS crisis through the 1990s. Today, when people living with HIV can successfully manage the disease with highly effective therapies, it remains essential.

But the program and the true safety-net clinics that rely on it is teetering on the brink of collapse due to statutory silence in key areas. It turns out that the attraction of using significant savings on medicines to boost profit margins has been irresistible to some for-profit entities, at the expense of the safety net. The for-profit entities dipping into the 340B program’s discounted prescription drugs now include, among others, well-resourced hospitals in wealthier zip codes, pharmacy benefit managers (PBMs), and a vast network of contracted pharmacies (also largely located in wealthier zip codes). The numbers on this point speak volumes: 340B discounted drug purchases amounted to $38 billion in 2020, more than 15 times what it was in 2005. As Congressman Bucshon noted, wouldn’t you expect a 15x increase in the amount of charity care that is available in this country?

The realities of how the 340B program is currently implemented is a clear indication that stronger accountability and transparency are urgently needed so that the program can begin to work as intended, and patients don’t continue to get left behind. Abuses of the program have been exhaustively documented by government watchdogs and others including analysis by an advocacy group for cancer patients that found that hospitals are overcharging patients for a common breast cancer drug. The research found that hospitals pay a discounted price of just over $43,000 for a year’s supply of the drug,   while charging patients over $217,000 for the same medicine, reaping a profit of more than $173,000 from just one patient, thanks to the program designed to help the nation’s poorest citizens. 

Patients are bearing serious consequences from the lack of clarity in the 340B program and the loss of critical resources safety-net providers depend on. As organizations that provide essential services and education for the HIV/AIDS community, we know this program must be better defined if it is to work as intended. We also know that Congress has a central role to play in making that happen. 

We can only achieve changes that work in the interest of the safety net if the diverse 340B community works together, rather than at odds with itself. That’s where the newly-formed Alliance to Save America’s 340B Program (ASAP 340B) comes into play. The Alliance’s 10 policy principles provide a critical foundation for Washington decision makers to change the trajectory of the program and improve administration and oversight at the federal level. The Principles are designed to ensure greater transparency and accountability; determine a “patient definition” with with stronger safeguards; establish clear criteria for 340B contract pharmacy arrangements to improve access; prevent middlemen and for-profit entities from profiting off the 340B program; and update and strengthen 340B hospital eligibility requirements.

Photo Source: ASAP 340B

Inaction will – not could but will – very soon have serious ramifications on the care that our community receives. Yet despite the diverse organizations that have come to the table to bring about change, not everyone agrees. A cacophony of voices – including some from the HIV community – has expressed concern or displeasure with the idea of bringing ideas to the table that would enhance transparency, accountability, and most importantly, deliver long-time certainty to the program. But notably, no comprehensive, viable alternatives have been offered. 

Congress and the administration have made it clear that making prescription drugs more affordable should be a major public health priority. Fixing the 340B program can move the needle on that goal, bringing health care affordability to our nation’s most underserved patients and communities.

This opinion piece was also published on June 7th in POZ.

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.

Reflections from an HIV Advocate's Journey: Nancy Duncan

By: Nancy Duncan, HIV Peer Educator

My HIV advocacy journey has been twenty plus years in the making, and one I never thought I’d see. I contracted HIV 34 years ago and was very ill for many years. Death loomed over me for several years after my diagnosis in 1990, and I didn’t think I was going to make it. However,  I managed to hang on long enough for the new antiviral medications that came out in 1996 and they saved my life!

I was so grateful to have been given another chance at living, so I wanted to give back in some way and it was now my time to step up and help make a difference in my community. I started by sharing my story in high schools in 1998, and then became trained to be a peer educator. Then I discovered a whole network of advocacy on Long Island, New York when I started attending the Consumer Involvement Committee meetings sponsored through the Nassau/Suffolk HIV Health Services Planning Council of which I have been a member since 2007 to present. I’ve done many legislative visits on Long Island to advocate about the needs of people living with HIV and how important the Ryan White funding is for those who are not insured or under insured.

Both POZ Magazine and A & U Magazine took an interest in what I do at Planned Parenthood of Nassau County, where I’ve worked as a peer for 15 years now and did articles about my story of living with HIV, my advocacy and everything else I do. I was proud to be on the cover of POZ magazine since I have no shame about living with HIV. We need this stigma needs to end!  I became a POZ 100 honoree as a long- term survivor that same year and have since been honored with several other awards.

I’ve attended many HIV related conferences, including the ADAP Advocacy Association's Annual Conference for several years now, and I’ve brought back so much valuable information that I always pass along. It’s been such a privilege to meet and network with so many other amazing advocates from all over the country, many of whom have inspired me immensely and have helped my journey blossom. This year, I also received a scholarship to attend HealthHIV's Synchronicity in Washington, DC.

People living with HIV know best what is needed to maintain a good quality of life and advocating to secure our rights for ourselves and one another can help make that happen. Those of us who are willing to put our faces out there can inspire others and help them feel less stigmatized. My message here is to let others know that living with HIV is not the end of the world and there are so many ways we can spin this around and make a difference, even if it’s just a small one. Advocates speak on behalf of all people living with HIV and are the voice for those who cannot speak for themselves.   Advocacy may seem intimidating at first but there are many ways we can get involved right in our own communities. Every voice counts and every voice matters when it comes to saving our lives.    People ask me why I do so much, well it’s because for now I can and for that I’m grateful.




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.

Mainstream News Media Has a Long History of Failing the HIV Community

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

The New York Times recently issued a meā culpā for its disastrous failure to adequately cover the emergence of the AIDS crisis in the early days of the epidemic. In many ways the newspaper helped to fuel the stigma still lingering today with their coverage that often included incorrect information or unsubstantiated claims about the disease. Its news miscarriages also included not reporting timely on the emerging crisis as it unfolded, or tucking the stories in the back of the newspaper.[1] Unfortunately, aside from the positive (pun intended) emergence of today's HIV-focused news outlets — such as The Body, HIV Plus Magazine, POZ Magazine, to name a few — people living with HIV/AIDS have continually been let down by the mainstream news media.

"The New York Times had a spotty record of covering the AIDS epidemic in the early 1980s — and gay culture in general. Times staffers reflect on the paper’s past, and what we can learn from it today."[2]

Larry Kramer, one of the most iconic figures in the fight against HIV/AIDS, described the Times' coverage in the early days as nothing less than homophobic. In fact, Kramer's assessment of the newspaper included a blistering indictment because "many millions are dead from a plague that the Times wouldn’t warn the world about.”[3]

Photo Source: NY Magazine

The New York Times wasn't the only culprit fueling HIV-related stigma among the mainstream news media in the 1980s, as was recently documented by HIV Plus Magazine's exposé on the infamous "patient zero" myth. The article, 'Patient Zero': Correcting the Record on a Media-Made Gay AIDS Villain, systematically dissects how Gaëtan Dugas was created into a monster by legacy news outlets, such as Time® Magazine, CBS News' 60 Minutes, and the New York Post.

The 1990s would prove no different. Who could forget the spotty, stigma-fueled news reporting on the HIV diagnosis of the legendary NBA basketball player Earvin “Magic” Johnson in 1991, as well as the death of the Godfather of Gangsta rap, Eric Lynn Wright (better known by his stage name Eazy-E) in 1995.

The long history of checkered reporting by the mainstream news media made it more difficult to dispel the myths surrounding the disease. It fact, systemically poor so-called "reporting" enabled bigots like former U.S. Senator Jesse Helms to demonize people living with HIV/AIDS in the 1980s-1990s, and Vice President Mike Pence to propose morally bankrupt ideas in 2000.

Photo Source: Andrew Kaczynski's Twitter Feed

In 2010, only crickets could be heard when over 10,000 people living with HIV/AIDS in 13 states were placed on waiting lists to access their life saving medications under the AIDS Drug Assistance Program ("ADAP"). Why? Because the mainstream news media barely addressed the public health crisis. At the time, not a single national television broadcast segment by ABC, CBS or NBC covered the ADAP Crisis, as it would be termed. If not for some mainstream news media journalists, such as op-ed columnist Charles M. Blow, then the advocacy to secure the necessary funding would have been even more difficult.

The trend has continued today, with virtually no reporting on the discriminatory design behind HIV treatment in the Affordable Care Act ("ACA") marketplace. Whereas overall people living with HIV/AIDS have been well-served by the ACA, there are still many shortcomings not being covered by the mainstream news media.

It is hard to look back over the years and not come away with the conclusion that the mainstream news media has a long history of failing the HIV community. As a result it has made advocacy even harder!

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[1] Soller, Kurt (2018, April 27). Six Times Journalists on the Paper’s History of Covering AIDS and Gay Issues. The New York Times. Retrieved from https://www.nytimes.com/2018/04/27/t-magazine/times-journalists-aids-gay-history.html.
[2] Soller, Kurt (2018, April 27). Six Times Journalists on the Paper’s History of Covering AIDS and Gay Issues. The New York Times. Retrieved from https://www.nytimes.com/2018/04/27/t-magazine/times-journalists-aids-gay-history.html.
[3] Artavia, David (2018, May 4). The New York Times Apologizes for Ignoring AIDS. HIV Plus Magazine. Retrieved from https://www.hivplusmag.com/stigma/2018/5/04/new-york-times-apologizes-ignoring-aids.
[4] Broverman, Neal (2018, May 15). 'Patient Zero': Correcting the Record on a Media-Made Gay AIDS Villain. HIV Plus Magazine. Retrieved from https://www.hivplusmag.com/stigma/2018/5/14/patient-zero-correcting-record-media-made-gay-aids-villain.

You Wanna Buy Some Death Sticks?

By: Jonathan J. Pena

At the age of 15, I took a drag off of my first cigarette and like many teens it was a response to a curious nature that was coupled heavily by peer pressure. The cool menthol taste coating my throat gave me excitement knowing that in a few seconds I would be exhaling a puff of cascading smoke in front of my peers. From that point on, I can remember smoking up to two packs of cigarettes a day. My lungs hurt just thinking about it now. Smoking cigarettes, as we all know, is a terrible habit to pick up. It has many damaging chemicals and compounds that can lead to some serious illnesses that can be fatal. Living with HIV requires a focus on living a healthier life, so it begs the question: what are the consequences of lighting up while on antiretroviral treatment?

Photo Source: Star Wars: The Clone Wars

In the United States, more than 4 in 10 people living with HIV are smokers, and people within this population are at great risk of dying from lung cancer according to a recent article published in POZ magazine. They also highlighted findings from a preceding published Danish research study in 2012 indicating that those who smoked and also were HIV-positive would lose 12 years of life in comparison to nonsmokers.[1] Poof, up in smoke! 

An additional study was noted by POZ Magazine from the research team at Massachusetts General Hospital that published their findings in JAMA Internal Medicine. They were interested in finding the estimated risk of lung cancer with people living with HIV in the United States. Through computer simulation the parameter of interest also include current, former smokers and those who never smoked. The study estimated that 25 percent of people who were smokers, HIV-positive and adherent to their antiretroviral (ARV) therapy would die of lung cancer. That number is estimated to be 6 percent if a smoker quits by 40 years of age.[2]

Some additional information was published by NAM's AIDS Map that further illustrates the growing concern with smoking and being HIV-positive. They indicated that in 2015, 40 percent of people living with HIV/AIDS in the United States were smokers. This was in contrast to only 15 percent of the general public. Additionally, what their finding show is that those who are adherent to their medication are 6 to 13 times more likely to die of lung cancer instead of an AIDS related sickness.[3]

I smoked for many years even after my HIV-positive diagnosis. I can understand why so many people living with HIV smoke. As a former smoker, I saw smoking as the one vice that I was able to allot myself because, heck, I was already HIV-positive so why the hell not? Thankfully, through fantastic leaps in modern medicine and no small amount of personal maturity, I am able to light up my life with healthier alternatives like exercising, eating well and continuing to adhere to my medication.

We owe it to ourselves to be more health conscious on what we put into our bodies, especially for those of us living with the virus. Our hands have the ability to do so many great things that involve creation, innovation, and love but all of that would be diminished or lost if we decide to replace it with "death" sticks.

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

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[1] POZ Magazine (2017, September 18); 1 in 4 Smokers on Successful HIV Treatment Projected to Die of Lung Cancer. Retrieved from https://www.poz.com/article/1-4-smokers-successful-hiv-treatment-projected-die-lung-cancer.
[2] POZ Magazine (2017, September 18); 1 in 4 Smokers on Successful HIV Treatment Projected to Die of Lung Cancer. Retrieved from https://www.poz.com/article/1-4-smokers-successful-hiv-treatment-projected-die-lung-cancer.
[3] Alcom, Keith. (2017, September 19). Smokers with HIV doing well on treatment now at greater risk of lung cancer than AIDS. NAM Publications. Retrieved from https://www.aidsmap.com/Smokers-with-HIV-now-at-greater-risk-of-lung-cancer-than-AIDS/page/3173651/.