Thursday, August 16, 2018

An Inherent Value in Advocacy Partnerships

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

As we've witnessed our national dialogue boil over into "us versus them" or "red versus blue" or "urban versus rural" or the even more egregious "you're either with us or you're against us", it is important to remember there is an inherent value in advocacy partnerships. It is even more important for the HIV advocacy community to continue to leverage broad partnerships, rather than retreat into corners. Adopting the latter approach would surely result in less potent national and state-level advocacy, fewer programmatic outcomes, and far less access to care and treatment for the patients who need it.

The ADAP Advocacy Association has long boasted in its tag line that it "works with advocates, community, health care, government, patients, pharmaceutical companies and other stakeholders." Yet, all too often, some question why one group or another is invited to sit our communal table. Unfortunately, it is happening more so in recent years. It is a troubling trend, no doubt.

Our organization's primary audience is the patient. One of our core value statements is that the voice of individuals living with HIV/AIDS shall always be at the table and the center of the discussion. All too often the patient voice is pushed aside, or not even included in important conversations because they're characterized as "bitching and moaning" rather than proposing solutions. But haven't patients earned that right, because after all they're the ones living with the damn disease? That said, such an narrow attitude under-estimates the valuable contributions made by patients every single day!

Likewise, state health department employees aren't the enemy. They are our partners and if state agencies are doing something counterintuitive to promoting greater access to care and treatment, then it is the advocacy community's and patient community's role to engage them. Joey Wynn, who serves as a board member to this organization, routinely engages state agencies in Florida...including when those same agencies are doing something the local advocacy community finds potentially harmful. Joey's approach has served people living with HIV/AIDS in South Florida rather well, too. In fact, I've personally witnessed the effectiveness behind his approach at a town hall meeting in Miami (as seen above when Joey invited me to speak), as well as his past leadership with the Florida HIV/AIDS Advocacy Network ("FHAAN").

Beating up on pharmaceutical companies is easy, and it most certainly is a popular thing to do. Yet, it is indeed possible to push back on the high cost of prescription drug prices while simultaneously working with these same partners to fight harmful public policy proposals, such as federal budget cuts, or the dangerous idea of drug importation.

Rev. William Barber II at Moral Monday rally in North Carolina
Photo Source: Wikipedia

Nashville, Tennessee-based advocate and social media guru Josh Robbins is prime example! Josh has partnered with numerous private entities  such as medical diagnostic companies and pharmaceutical companies  and various public agencies  including health departments  to promote a litany of public health initiatives ranging from National HIV Testing Day, U=U, and access to PrEP. His groundbreaking work in Tennessee could not have been achieved operating from a silo.

Wanda Brendle-Moss, who also serves as a board member to this organization, recently reflected on her HIV advocacy journey. Wanda has demonstrated that collaboration is an effective advocacy tool in North Carolina, evidenced by her relationships with the North Carolina AIDS Action Network, North Carolina Harm Reduction Coalition ("NCHRC"), and the Rev. William Barber II's Moral Mondays (as seen in the photo above). Wanda would work with anyone who will answer her phone call, email, or text!

Speaking of North Carolina and NCHRC, under the leadership of the former executive director, Robert Childs, progressive harm reduction policies were adopted in a conservative state with an even more conservative General Assembly. Such legislative victories in the state included achieving syringe exchange programs, expanded Naloxone access, Good Samaritan protections, prescription drug monitoring programs, among other things. How? It was the advocacy partnerships developed by NCHRC, including with some VERY unlikely allies.

Nationally, efforts such as the ongoing U=U campaign ("Undetectable = Untransmittable") to reduce HIV-related stigma could not have happened without Bruce Richman's steady leadership. It isn't surprising that Bruce has assembled an extremely broad coalition of community partners, representing all stakeholder groups.

The most effective advocacy is rooted in advocacy partnerships, and not rivalries. With the current occupant residing at 1600 Pennsylvania Avenue being so unfriendly to our community, such advocacy partnerships are even more important now!

Friday, August 10, 2018

Award Honorees Embody Our Commitment to the Public Health Safety Net

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

The ADAP Advocacy Association announced earlier this week the honorees for its Annual ADAP Leadership Awards, which recognize individual, community, government and corporate leaders who are working to improve access to care and treatment for people living with HIV/AIDS  including under the AIDS Drug Assistance Program (ADAP). The 2017-2018 award honorees reflect the theme of the organization's 11th Annual ADAP Conference, “Mapping a New Course to Protect the Public Health Safety Net,” being held in next month in Washington, DC.

As in years past, it is always difficult selecting the honorees for the various awards because so much amazing work continues to be done fighting the HIV/AIDS epidemic. But some work always stands out and it deserves our recognition! It is our way of saying, thank you.

aaa+ Leadership Awards

The following awards will be presented during the Annual ADAP Leadership Awards Dinner, which will be hosted on Friday, September 21st:
  • “William E. Arnold” ADAP Champion awarded to Evelyn Foust, Director of the North Carolina DHHS Communicable Diseases Branch. Evelyn has been instrumental in the implementation of the ADAP premium assistance in the state. 
  • ADAP Corporate Partner awarded to Lambda Legal for their tireless work on behalf of so many people living with HIV/AIDS, including most recently with Harrison v. Mattis & Doe v. Mattis
  • ADAP Lawmaker awarded to the Honorable John McCain, Arizona’s senior U.S. Senator, for his courageous thumbs down vote against repealing the Affordable Care Act. Sen. McCain's surprise vote ensured countless people living with HIV/AIDS continued to receive care. Former President Barack Obama even called McCain to thank him!
  • ADAP Community Organization awarded to the Community Research Initiative ("CRI"), based in Boston, MA. CRI embodies the community-based focus that has long been associated with appropriate and timely access to care and treatment for people living with HIV/AIDS. Serving over 12,000 clients in the greater metropolitan area of Boston, CRI not only manages Massachusetts’ AIDS Drug Assistance Program, but it has also been on the front lines in fighting Hepatitis C, training service providers on culturally competent care, and advocating for successful prevention strategies, just to name a few. Learn more at
  • ADAP Social Media Campaign awarded to Jennifer Vaughan for her YouTube channel,"Jennifer’s Positive HIV Life,"with over 10,000 subscribers and with almost 2 million views on her 90+ videos about living with HIV/AIDS.
Information about the awards (including former honorees) is listed online at

Tickets for the awards dinner can be purchased online. This year's awards dinner will be headlined by the one and only, Josh Robbins (who also happens to be a past award honoree).

Congratulations to the honorees of the 2017-2018 ADAP Leadership Awards!

Thursday, August 2, 2018

Reflections from an HIV Advocate's Journey: Wanda Brendle-Moss

By: Wanda Brendle-Moss, Board Member, ADAP Advocacy Association

It amazes me when people praise me for “being so brave" for telling my story, or this one: "I can never do what you do!” But here is the truth; I was diagnosed with HIV in July 2002, with AIDS in May 2008 (and that’s another story to be shared later), yet my advocacy journey didn’t start until I became homeless in December 2009. It took me SEVEN years to find my bravery. My local AIDS Service Organization placed me in transitional housing and unknown to them, it gave me courage to start a new and exciting journey.

Wanda Brendle-Moss
Photo Source: HIVPlus Magazine

Upon reflection, social media made it easier for me to find my footing in the advocacy world. I volunteered during AIDS 2012 after many months of joining in social media advocacy. Yet, even still I was still tentative in calling myself an advocate. I added my name to the email lists of all the top national HIV advocacy groups, including that of ADAP Advocacy Association (aaa+). This one was important to me personally because North Carolina was having all sorts of problems and it led to issues for those of us dependent on ADAP funding to receive our meds! At one time, North Carolina had one of the largest ADAP waiting lists, too.

In 2013, I attended my very first ADAP Conference after the ADAP Advocacy Association extended a scholarship to me. I was the ONLY attendee from my state! I felt so overwhelmed, yet at same time felt a tiny flicker of determination being born! Brandon Macsata, who I was in awe of because he ensured patients are front and center, offered me much encouragement to “spread my advocacy wings”, and to not be afraid to “just do it”! That encouragement started me on journey to the advocate many of you know today. Years later, Brandon was so impressed with my growth as a self advocate that he asked me to join the organization’s board of directors!

I’ve learned that advocacy cannot be dictated by anyone, or any organization. We are all different, and we have different ways of engaging in the fight to end the epidemic. It is troubling to see some organizations shut out the patient voice, while others use it to protect systems rather than people. Each of us living with or impacted by HIV must learn how to be advocates. Blogging may not be for you. Protesting might not be a good fit for you. Meeting one-on-one with lawmakers may intimidate you. And that is okay! There are still days when I wonder if I am a worthy advocate, and I reflect: YES I AM

All these words are simply meant to encourage you to take that leap of faith and believe in yourself, even through the setbacks! Get online and join listservs of organizations who do the work you’re passionate about! Take that first step and before you know it you will be telling your story!

I look forward to meeting you as our advocacy journeys cross paths!

Thursday, July 26, 2018

Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs

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

In May 2018, drug pricing took center stage as the U.S. Department of Health & Human Services released its proposed Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs. It what has been characterized as "a way forward in fight against mushrooming costs,"[1] HHS has set the stage for an extremely important debate...and likely the most contentious battle on health policy since passage of the Affordable Care Act.

Drug Prices
Photo Source: NBC WPSD-6

According to the Notice published in the Federal Register, HHS' blueprint covers multiple areas including, but not limited to:[2]
  • Improving competition and ending the gaming of the regulatory process,
  • supporting better negotiation of drug discounts in government-funded insurance programs,
  • creating incentives for pharmaceutical companies to lower list prices, and,
  • reducing out-of-pocket spending for patients at the pharmacy and other sites of care.
Comments on the blueprint were due on or before July 16, 2018.

The ADAP Advocacy Association endorsed two coalition letters submitted to HHS.

One letter, spearheaded by the Patient Access Network Foundation (PAN), "cautions against HHS undertaking policy changes without evidence-based research. HHS must be confident that any changes it makes will have the intended positive impact on individuals and families, with no unintended consequences that could harm patients and make prescription drugs less affordable and accessible."[3] PAN's letter was signed by 52 patient advocacy organizations, representing millions of patients with serious, life-threatening, chronic, complex and disabling conditions.

The other letter was a collaborative effort led by the HIV Health Care Access Working Group (HHCAWG), which represents over 100 national and community-based HIV service organizations representing HIV medical providers, public health professionals, advocates, and people living with HIV who are all committed to ensuring access to critical HIV- and Hepatitis C-related health care and support services.

We have compiled a listing of the comments submitted by some other organizations, which are available to download here:


[1] Aronson, Lauren (2018, July 13). Blueprint to Lower Drug Prices could offer a way forward in fight against mushrooming costs. The Hill. Retrieved online at
[2] A Notice by the Health and Human Services Department (2018, May 16). HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs. Retrieved online at
[3] Naples, Maggie (2018, July 17). National Patient Advocacy Organizations Come Together to Respond to the HHS Blueprint to Lower Drug Prices and Reduce Out-of-Pocket (OOP) Costs. Patient Access Network Foundation. Retrieved online at

Thursday, July 19, 2018

UPDATE: Hey Trump! Hands Off Our Ryan White HIV/AIDS Program!

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

The ADAP Blog last week addressed troubling news that the U.S. Department of Health & Human Services ("HHS") planned to divert funds from existing programs to pay for the rising cost associated with the Trump Administration's controversial "zero-tolerance" immigration policy. This statement was indeed true (as fact checked by Snopes),[1] though fortunately the impact is debatable since none of the diverted funding came from the current year's program. What it did accomplish was to ignite a firestorm among many in the HIV grassroots community.

Snopes: True

The good news, especially for the HIV grassroots community, is none of the transferred funding will impact Ryan White-funded supports or services to people living with HIV/AIDS for the current program year. The transfer included expired Ryan White funds from FY 2016, which hadn't been spent and was due to be returned to the U.S. Treasury. Basically the news is still bad, but not nearly as bad as initially thought.

Though news about HHS transferring funds only broke last week by Slate, it has subsequently been determined that the transfer request was made in January 2017. As reported by POLITICO, nearly $200 million in funds were moved to address the refugee crisis, including "at least $17 million in unspent funds on the Ryan White HIV/AIDS program."[1]

Emily Holubowich, executive director of the Coalition for Health Funding, raised an excellent point in the POLITICO article when she argued, "If there’s leftover money from Ryan White, it should go to support programs for poor people with HIV and AIDS, not this outrageous separation policy."[3]

This point is exactly why the flames are still burning among many grassroots activists at the state and local levels. It begs the question, couldn't those Ryan White dollars have been used to expand drug formularies under the AIDS Drug Assistance Programs ("ADAP") to pay for anti-diarrhea medications, or Hepatitis C ("HCV") therapies for people co-infected with HCV, or lipodystrophy treatments? These concerns were spelled out in a blog earlier this year.

Donald J. Trump
Photo Source: NY Magazine

Furthermore, at what point does the HIV community draw a red line with the Trump Administration and its Family-Research Council ("FRC") cronies known for their anti-immigrant, racist, homophobic, and misogynistic views? This Administration has been attacking people living with HIV/AIDS for the last eighteen months by proposing harsh federal budgetsdemonstrating a flagrant disregard for the public health systemignoring key leadership postssanctioning discrimination by healthcare workersundermining the Patient Protection and Affordable Care Act, and most recently deleting 20 years of critical medical guidelines. Make no mistake...Trump and the FRC have brought the fight to people living with HIV/AIDS.

Overall the Ryan White program, in general, and ADAPs, specifically, are extremely well-run programs. This is a message that the community should embrace, and not run away from out of fear. The best defense is a good offense!


[1] Garcia, Arturo (2018, July 13). Are Federal HIV Treatment Funds Being Used for Immigrant Internment? Snopes. Retrieved from:

[2] Diamond, Dan (2018, July 18). Trump’s migrant fiasco diverts millions from health programs. POLITICO. Retrieved from:
[3] Diamond, Dan (2018, July 18). Trump’s migrant fiasco diverts millions from health programs. POLITICO. Retrieved from:

Thursday, July 12, 2018

Hey Trump! Hands Off Our Ryan White HIV/AIDS Program!

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

Earlier this week, Slate reported that the U.S. Department of Health & Human Services ("HHS") planned to divert funds from existing programs to pay for the rising cost associated with the Trump Administration's controversial "zero-tolerance" immigration policy. The policy, which separates children from their families on the southern border, is overseen by the HHS Office of Refugee Resettlement, and it is burning through so much cash that it needs more. In the crossfire is millions of dollars in funding designated for HIV/AIDS services under the Ryan White CARE Act.[1]

According to the reporting by Slate, HHS is planning for a surge in immigrant minors over the next three months:[2]
"The internal documents estimate that if 25,400 beds are needed, ORR would face a budget shortfall of $585 million for ORR in fiscal year 2018, which ends on Sept. 30. Under this scenario, that shortfall would increase to $1.3 billion in the first quarter of fiscal year 2019, adding up to a total shortfall of $1.9 billion for the period between Oct. 1, 2017, and Dec. 31, 2018. The documents stress that these budget estimates represent maximum possible expenditures and that actual expenses may be lower. The Department of Health and Human Services did not respond to multiple requests for comment about these figures or anything else relating to the documents."
In order to offset the budgetary shortfall, HHS will seek supplemental appropriations from Congress, as well as reallocate existing funds from within the department  including Ryan White funding. Slate's reporting also indicates the process of transferring those HIV/AIDS funds is underway.

The ADAP Advocacy Association has strongly condemned this decision. In an era when people living with HIV/AIDS are already facing enough uncertainty over the current government's commitment to fighting the epidemic, it was the latest setback to achieving an AIDS-free generation.

The pushback from a leading national patient advocacy group was swift when news broke that the Trump Administration would use Ryan White HIV/AIDS program dollars to fund its widely unpopular family separation policy at the southern border. AIDS United CEO Jesse Milan, Jr. issued a strongly-worded statement on the funding reallocation:[2]
"As a payer of last resort, the Ryan White Program covers services for people that have no other means to pay for them. Any shortages in funding to the program would result in essential services not provided to potentially thousands of Americans. This could mean people not receiving life-saving medications or losing insurance coverage because funding was not available to cover their premiums. For an administration that just recently proclaimed its commitment to ending the HIV epidemic in this country, stripping funding from the largest HIV-specific federal program defies all logic."
The fact that the money being diverted is "unspent" money makes no difference to people living with HIV/AIDS who rely on Ryan White-related supports and services. There are always creative ways to spend or transfer federal money within an agency's budget,[4] because it happens all of the time. And considering there are ongoing challenges facing ADAP consumers limiting their access to care, such as restrictive drug formularies, that money should be spent on people living with HIV/AIDS. (Editor's Note: Read our previous blog on open drug formularies, "ADAP Open Drug Formulary Programs Improve Access to Care & Treatment; So why are there so few?")

Numerous national LGBTQ groups also condemned the news, including Lambda Legal and Human Rights Campaign. It appears that this development is fluid, and we will continue to closely monitor it.


[1] Stern, Mark Joseph. (2018, July 10). Trump’s Office of Refugee Resettlement Is Budgeting for a Surge in Child Separations. Slate. Retrieved from:
[2] Stern, Mark Joseph. (2018, July 10). Trump’s Office of Refugee Resettlement Is Budgeting for a Surge in Child Separations. Slate. Retrieved from:
[4] (2013, June 6). Transfer and Reprogramming of Appropriations: An Overview of Authorities, Limitations, and Procedures. R43098. Retrieved from

Thursday, July 5, 2018

Linkages to Care During Post-Incarceration

By: Jonathan J. Pena, intern, ADAP Advocacy Association, and rising junior in social work, North Carolina State University

The ADAP Advocacy Association late last year announced its Correctional Health Project, which aims to raise awareness about issues confronting formerly incarcerated populations living with HIV/AIDS (and/or Hepatitis C) who also access care and treatment (or whom could benefit from such care and treatment) under the AIDS Drug Assistance Program ("ADAP"), as well as provide useful resources and tools to the communities serving them. A subsequent blog also focused on the issue. While this approach is an effort to sharpen the scope and need for access to care and treatment for HIV-infection (and/or HCV) among formally incarcerated populations, it is equally important to widen to the lens just for a minute in order to see where we stand globally on the issue of incarceration.

Incarceration rates are highest in the United States out of any country, which translates to 910 per 100,000 adults.[1] When you factor in the 1.2 million people living with HIV in the U.S, a sixth of this population are entering prisons and jails and also transitioning back into their communities.[2] This sets the stage for an enormous request to address the needs of these populations so that the public health system may begin to seal the cracks that they fall through by utilizing accurate assessments and combining it with proactive case management in order to link them to care.

Programs do exist, such as State ADAPs, which are designed to assist these individuals. But the most recent National ADAP Monitoring Project demonstrates that ADAPs are assisting some of these individuals, it is also clear more can be done to assist them. The National AIDS Strategy also provides some guidance to help formerly incarcerated populations achieve viral suppression.

Viral suppression is crucial for HIV-positive ex-offenders during post-incarceration but the challenges that they face can seem monstrous and when faced with so many immediate competing needs like housing, food and transportation, continuity of viral suppression may fall by the waste side. Very often the linkage to care is lost for these populations due to poor discharge planning and thus limited access to quality based community programs. As a result the natural onset of vulnerability that is placed on an HIV-positive ex-offender is amplified when re-entering their communities that the possibility for them to engage in risky behavior like drug use, and transactional unprotect sex to maintain goods increases. These negative affects of poor discharge planning not only hurts the ex-offender but also hurts those within their community with other possible new cases of infection if they are not adherent to their medication.

Staying Strong Inside
Photo Source: SERO

Jails and prison systems are such dynamic institutions that they face additional compounding challenges to providing heath services other than HIV. With such a revolving door, these institutions have to tackle issues like addiction and mental illness. However, what seems to be alarming is the rate of HCV infections. A team of researchers at the National Drug and Alcohol Research Centre at the University of New South Wales in Sydney pooled together a series of data from 196 countries spanning from 2005 through 2015 that aimed at determining the number of inmates with HIV, hepatitis B virus, hepatitis C virus, and TB. This data indicated that out of 10 million inmates, HCV ranked at the top with 15.1% of infections and with HIV estimated at 3.8% of infections.[3]

As the ADAP Advocacy Association's Correctional Health Project continues to take shape, it is important to convey some of the needs driving our interest behind it. Important community resources will be made available in a few months.


[1]  The Lancet HIV. (2017, November 27). Predictors of linkage to HIV care and  suppression after release from jails and prison: a retrospective cohort study. Retrieved from:
[2] The Lancet HIV. (2017, November 27). Predictors of linkage to HIV care and  suppression after release from jails and prison: a retrospective cohort study. Retrieved from:
[3] HIVandHepatitis. (2016, September 07). AIDS 2016: Neglect of Infectious Disease in Prisons Highlighted at Conference. Retrieved from:

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

Thursday, June 28, 2018

2018 National Ryan White HIV/AIDS Program Part B & ADAP Monitoring Project Annual Report

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

The National Alliance of State & Territorial AIDS Directors ("NASTAD") earlier this year released its annual report on the AIDS Drug Assistance Program ("ADAP"), 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report. It includes state-level program-related major findings, tables, with data, and thus it provides the most comprehensive snapshot on all 50 states, District of Columbia, Puerto Rico, U.S. Virgin Islands, and the six U.S. Pacific Territories. It is a must-read for ADAP stakeholders!

2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report
Photo Source: NASTAD

Upon releasing the 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report, NASTAD issued the following statement:
"Building on the 22-year history of reporting on the AIDS Drug Assistance Program (ADAP), the National ADAP Monitoring Project, including the Annual Report, has evolved to include the program under which ADAP falls – the Ryan White HIV/AIDS Program (RWHAP) Part B program.  The Annual Report has thus been renamed and reimagined.  The 2018 National RWHAP Part B and ADAP Monitoring Project Annual Report (The Report) includes narrative and findings that span the totality of the RWHAP Part B program and reflect the reality that the achievements of ADAPs and other elements of the RWHAP Part B programs are inextricably linked."[1]
The report includes relevant information about ADAP's funding and structure, as well as key programmatic details  such as number of clients served, viral load suppression rates, and medical program expenditures. This year's report also includes important sections on structural inequities and the changing health care landscape. Infographics once again accompanied this year's report. In addition, a glossary of key ADAP terms can be found on the NASTAD website.

In FY2017, Congress appropriated $1.4 billion for RWHAP Part B programs, with $898.8 million appropriated to ADAP specifically. Funding was also allocated to 24 Part B Supplemental grants, 9 Part B ADAP Supplemental Treatment grants, and 9 ADAP Emergency Relief grants. Additional funding sources included Part A contribution allocated to Part B (2), State contributions (31), drug rebates (46), and other State/Federal funds (23).[2]

Some key findings include:
  • Fourth open enrollment period via Affordable Care Act insurance marketplace ended on April 30, 2017[3]
  • Part B estimated drug rebates = $193,335,704[4]
  • ADAP estimated drug rebates = $723,825,912[5]
  • $398.2 million in estimated expenditures insurance purchasing/continuation[6]
  • 48% ADAP clients served by full-pay prescription program only[7]
  • 38% ADAP clients served by ADAP-funded insurance program only[8]
  • 14% ADAP clients served by ADAP-funded insurance and full-pay prescription programs[9]
  • 273,680 RWHAP Part B & ADAP clients enrolled[10]
Other key component of the report include valuable information about clients co-infected with HIV and Hepatitis C ("HCV"), incarcerated and formerly incarcerated populations, aging populations (and related morbidity and mortality), and clients impacted by substance use. As is customary, NASTAD should be applauded for their amazing work on pulling together all of this information for ADAP stakeholders.

To download the 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report, go to


[1] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report. Retrieved from
[2] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 9). Retrieved from
[3] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 11). Retrieved from
[4] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 15). Retrieved from
[5] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 15). Retrieved from
[6] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 25). Retrieved from
[7] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 27). Retrieved from
[8] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 27). Retrieved from
[9] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 27). Retrieved from
[10] National Alliance of State & Territorial AIDS Directors (2018, May). 2018 National Ryan White HIV/AIDS Program (RWHAP) Part B and ADAP Monitoring Project Annual Report (p. 30). Retrieved from

Thursday, June 21, 2018

Why Our Annual ADAP Leadership Awards Are More Than a Shiny Plaque

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

The ADAP Advocacy Association earlier this week announced the Call for Nominations for its 2018 Annual ADAP Leadership Awards. The awards recognize individual, community, government and corporate leaders who are working to improve access to care and treatment for people living with HIV/AIDS - notably under the AIDS Drug Assistance Program (ADAP). Whereas the honorees are awarded a shiny plaque, more importantly they receive the acknowledgment and appreciation for their meaningful contributions to ending the epidemic impacting the 1.1 million people in the United States who are living with HIV/AIDS.

Submit a nomination at

Nominations are solicited annually from the community, and honorees are selected by an Awards Committee comprised of our board members, as well as other ADAP stakeholders (including former award honorees). The awards are presented to the honorees during our Annual ADAP Leadership Awards Dinner, which is held at the conclusion of our Annual AIDS Drug Assistance Program Conference in Washington, DC. This year's awards dinner is slated for Friday, September 21st and it will be headlined by the one-and-only Josh Robbins, who is "one of the coolest HIV-positive patient advocates in the history of the world."

The award categories focus on community-based advocacy, social media advocacy, and grassroots advocacy. Additionally, individuals are recognized for their contributions with the "William E. Arnold" ADAP Champion award, Emerging Leader award, and Lawmaker award. Other awards are also part of the annual celebration of the grit, grind, satisfaction, and tribulations associated with fighting the epidemic.

2018 represents the eleventh year that the ADAP Advocacy Association has publicly thanked honorees for their leadership, and since 2010, it has been done at our awards dinner. We invite you to nominate someone today at

Thursday, June 14, 2018

National Survey on State of ASOs/CBOs Identifies Key Trends

By: Brian Hujdich, Executive Director, HealthHIV & Marissa Tonelli, Senior Capacity Building Manager, HealthHIV

AIDS Service Organizations and Community-Based Organizations ("ASOs"/"CBOs") need more financial support to expand services, diversify funding, integrate clinical services, and improve fiscal processes in order to remain relevant in the dynamic healthcare landscape, according to HealthHIV's inaugural State of ASOs/CBOs National Survey.

Key survey findings indicate that:

  • Over 75% of ASOs/CBOs increased service offerings in the past three years in response to client needs.
  • Nearly all ASOs/CBOs offer HIV testing and counseling; however, only 49% offer PrEP services to clients and only 44% offer HIV care and treatment.
  • 33% of ASOs/CBOs report that funding comes from only government sources and 1 in 8 (12%) rely on a single source of funding to maintain HIV programs.
  • Over 33% of ASOs/CBOs have changed or expanded their missions in the past year and 25% developed a shared services partnership with another agency.
  • ASOs/CBOs need training and technical assistance on fiscal sustainability areas such as revenue generation/diversification, unit cost calculation for services, and performance-based payment models.

The most common word that ASOs/CBOs used to describe the state of ASOs/CBOs was 'challenging', which illustrates how organizations are struggling through the uncertain times. ASOs/CBOs must continue to evolve to remain relevant since they play a vital and necessary role in ending the epidemic. We hope the survey data will assist in guiding stronger, resilient organizations.

The report of HealthHIV’s inaugural State of ASOs/CBOs in the US(TM) survey (right) includes data reported from over 500 ASOs/CBOs and provides insights on how ASOs/CBOs are responding to the current HIV and healthcare landscapes, including impacts on workforce development, service coordination, fiscal sustainability, partnership development, and strategic planning. Survey findings emphasize the need for more diverse interdisciplinary training and technical assistance opportunities.

ASOs/CBOs across the country are reaching the most vulnerable populations at highest risk for HIV infection. Survey results indicate that these organizations are largely reliant on government funding for their HIV services; putting them at financial risk in the dynamic healthcare landscape. Now, more than ever, ASOs and CBOs need training and guidance to ensure sustainability of HIV programs by increasing fiscal diversification and demonstrating the impact and value of their HIV programs.

In conjunction with the survey, HealthHIV and the Test Positive Awareness Network (TPAN) launched an online National ASO/CBO Directory 2018 to create a national resource on the availability, breadth and depth of HIV services available to health care consumers. The Directory is searchable by services categories and location, and serves as a repository for organizations to initiate partnerships and streamline service delivery in their jurisdictions.

HealthHIV's State of ASOs/CBOs in the US survey report can be viewed on The National ASO/CBO Directory 2018 is at The online directory is a searchable repository of HIV prevention, care, and support services provided by ASOs/CBOs in the U.S. To add an ASO or CBO to the National ASO/CBO Directory 2018, complete the online form.

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

Thursday, June 7, 2018

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 New York Post front page coverage on AIDS
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.

Andrew Kaczynski's Twitter Feed on Vice President Mike Pence's controversial HIV plan
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!


[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
[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
[3] Artavia, David (2018, May 4). The New York Times Apologizes for Ignoring AIDS. HIV Plus Magazine. Retrieved from
[4] Broverman, Neal (2018, May 15). 'Patient Zero': Correcting the Record on a Media-Made Gay AIDS Villain. HIV Plus Magazine. Retrieved from

Thursday, May 31, 2018

Would You Like Some Carolina Sweet Tea with Your Felony Charge?

By: Jonathan J. Pena, intern, ADAP Advocacy Association, and rising junior in social work, North Carolina State University

When the time came to move out of New York City, I set my sites on moving down South. I have always heard that the South was very welcoming and full of charm, so I was naturally very exited to replant my roots in North Carolina. The southern charm of being in North Carolina was short lived because up until recently the state had an outdated HIV criminalization laws that required individuals living with HIV to disclose their HIV status to any sexual partners.

Failure to do so, among other requirements under the law, would result in serious consequences like prosecution and jail time. According to the Sero Project, in North Carolina the maximum penalty for violation is two years in prison if convicted.[1] There are numerous and various cases of this including a man living with HIV being convicted and then sentenced to 35 years in prison for using a deadly weapon on a police officer… his saliva.[2]

As a man living with HIV it sets off all my alarm bells for various reasons. The first is that much of driving force behind the adoption of the HIV criminalization laws was the fear that surfaced during the early years of the epidemic. Thirty years ago, it was certainly a death sentence but modern medicine has changed that diagnosis with the great leaps in antiretroviral therapy. According to the Centers for Disease Control & Prevention, anyone living with HIV who takes anti-retroviral medication as prescribed, and who have an undetectable viral load, presents no risk of transmitting the virus to an HIV-negative person.[3]

Unfortunately, many things have not changed along side modern medicine, such as fear, misconceptions and uninformed beliefs and thought processes regarding HIV. Additionally what concerns me with HIV criminalization laws is that it continues to keep the stigma that is attached to being HIV-positive in place. There are numerous forces that put in enormous effort to diminish or eradicate stigma but these laws set back all of the progress that has been made over the years. What these laws ultimately do is create a level of fear that is dangerous for those who are HIV-negative and HIV-positive. For those who are HIV-negative the fear of prosecution from an HIV diagnosis keeps them from being tested when the real fear is not knowing or infecting others unknowingly. For those who are HIV-positive the stigma and fear of prosecution pulls them away from seeking treatment or continuing their care. The end result is detrimental to those in and out of the HIV community and completely counterproductive.

Luckily, the recent change to the HIV-criminalization law in North Carolina has changed the steering for us as a collective society to head in a different direction.[4] Under the new law those living with HIV no longer have to disclose their HIV status to sexual partners if they are virally suppressed for six months or longer. Along side these changes, the revised law also reflects a change in language, which replaces “a person infected with AIDS” with “a person living with HIV”. While these changes are small they have huge impacts in the fight against HIV and the stigma that is attached to it. This revision is aligned with the changes that have occurred since the beginning of the epidemic and reflect more accurately the realities of living with HIV and the consciousness that is needed in order to ensure that we, as a collective society, are informed appropriately and accurately. If we continue this upward pace then things will definitely start getting a little sweeter down here.

Chart Comparison of the old versus new HIV Criminalization law in North Carolina
Photo Source: Western North Carolina AIDS Project

[1]  The Sero Project. North Carolina. Data from the GNP+ Global Criminalization Scan. Retrieved from:
[2] New York Times. (2008, May 16). Prison for Man With H.I.V Who Spit on a Police Officer. Retrieved from:
[3] HIV Plus Magazine. (2017, October 22). CDC Officially Admits People With HIV Who Are Undetectable Can’t Transmit HIV. Retrieved from
[4] Western North Carolina AIDS Project. (2018, Feb 20). HIV Criminalization Laws Change in North Carolina. Retrieved from:

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

Thursday, May 24, 2018

HIV/AIDS Fireside Chat Retreat Tackles Pressing Issues

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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Tampa, FL among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS and/or viral hepatitis. The Fireside Chat took place on Thursday, May 17th, and Friday, May 18th. Although there was no fireplace in the room, there was plenty of heat generated by the fiery give-and-take.

FDR Fireside Chat
Photo Source: Getty Images

The Fireside Chat included a series of three moderated white-board style discussions about the following issues:
  • 340B Drug Pricing Program
  • Opioid Epidemic & Impact on HIV
  • Ryan White Program & Underserved Communities
Each of the white board discussions was facilitated by a recognized content expert followed by an in-depth dialogue among the retreat attendees. The discussions certainly couldn't be characterized as a Kumbaya, since vastly different perspectives were seated in the room. Rather the discussions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Fireside Chat.

The ADAP Advocacy Association is pleased to share the following brief recap of the Fireside Chat.

340B Drug Pricing Program:

The discussion on the 340B Drug Pricing Program was facilitated by Jeffrey R. Lewis, President & CEO of the Legacy Health Endowment based in Turlock, CA. Lewis also serves as co-chair of the newly-minted national commission taking a thorough and candid review of the 340B Drug Pricing Program, and making specific recommendations to Congress on how and in what ways the program should be strengthened. The discussion focused on why the program is important to the Ryan White Program and other covered entities, such as hemophiliac clinics and community health centers. Also discussed were the “tough choices” to reform the program, as well as the “opportunities” to expand the program (i.e., Corrections), and why?

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

Opioid Epidemic & Impact on HIV:

The discussion about the ongoing intersection between the opioid epidemic and HIV was facilitated by David Fawcett PhD, LCSW. It focused on opioids among at-risk populations, but also the growing crystal methamphetamine use. Also discussed were health disparities and access to care, and harm reduction strategies  such as Syringe Exchange Programs ("SEPs") and medication assisted programs.

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

Ryan White Program & Underserved Communities (i.e., women, LGBT, formerly incarcerated, undocumented immigrants, etc.):

The discussion about underserved communities served (or potentially served) by the Ryan White Program was facilitated by Jeffrey S. Crowley, Program Director at the O'Neill Institute for National and Global Health Law, Georgetown University Law Center. It focused on the existing structure of the Ryan White Program and the program's essential roles, as well as evidence for the program’s success. Important questions raised included what are structural changes that could help the program to seize current or future opportunities to increase engagement in care and viral suppression, and should the program consider new roles (i.e. financing and delivering PrEP or financing HCV treatment for mono-infected individuals), among others.

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

Additional Fireside Chats are planned in 2018.

Thursday, May 17, 2018

Trump Administration Seeks to Re-Write Portions of 1557 Final Rule

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

When the Patient Protection and Affordable Care Act ("ACA"), or commonly called Obamacare, passed in 2010, of hot but limited debate was the potentially expansive nature of Section 1557 of the legislation. Considered to be a broad expansion of non-discrimination protections in health care, Section 1557 “prohibits discrimination on the basis of race, color, national origin, sex, age, or disability in certain health programs and activities.” Section 1557 is the first federal civil rights law to prohibit discrimination on the basis of sex in covered health programs and activities.

Despite citation of enforcement of this provision since 2010, the Obama Administration would wait until September 15, 2016 to issue a Final Rule outlining exactly how Section 1557 should be applied. Of particular note in the 380+ page rule, the U.S. Department of Health & Human Services ("HHS") gave guidance on translation service requirements, disability accommodation requirements, quality of care with regard to pregnancy history, and classified transition related care for transgender people as care protected on the basis of sex. HHS would cite certain legal precedent, including the Supreme Court decision in Price Waterhouse v. Hopkins (1989) and subsequent case law pertaining to “sex stereo typing” as it relates to gender identity and expression. In a somewhat surprisingly broad application, HHS’ Final Rule not only stated ability for government enforcement of Section 1557 but the right of private action by aggrieved patients. In short, patients were being extended the opportunity to sue certain private health care and insurance providers for refusing care to transgender people. To say this was a “big deal” would be an understatement. Transgender advocates went WILD with joy and celebration of a major win.

Vast portions of the Final Rule were to go into effect on January 1, 2017. On December 31, 2016, at the behest of five states and a group of Christian identified medical providers (including dentists…I’m not kidding), Judge Reed O’Connor of the U.S. District Court for the Northern District of Texas issued an injunction against implementation of portions of Section 1557 regarding transgender patient care protections and abortion related care. Judge O’Connor has a nasty history of him issuing rulings that marginalize LGBTQ Americans. This case, Franciscan Alliance, Inc. et al v. Burwell, was no different. The injunction prohibited the government from implementing and enforcing the Final Rule. It did not, however, prevent patients from seeking suit should they experience discrimination.HHS would reverse the position of defending the Final Rule after the administrative transitioned over to Donald J. Trump. In July, 2017 HHS submitted a brief seeking a stay while it “reconsiders” the policy, indicating an intention by new HHS leadership to walk back the nature of the protections offered by Section 1557. The stay was granted. It is of important note that HHS’ Office of Civil Rights is now lead by Roger Severino, an appointment widely opposed by equality organizations on the basis of Severino’s well documented and very public statements in support of discrimination against LGBTQ people.

The change has been haunting transgender advocates for almost a year. And here’s why:
  • Broadly, prior to the ACA, transgender identity was considered a “pre-existing condition”. The prohibition of refusal of coverage on the basis of a pre-existing condition meant transgender people, for the first time, could not be refused coverage at the application process. Still, transgender people commonly faced notation that plans did not cover transition related care. The Obama Administration's version of the Final Rule explicitly outlined that insurance companies could no longer continue the practice of excluding transition related care, impose burdensome requirements to qualify for coverage through discriminatory plan design, or impose burdensome appeals processes due to automatic denials of care because of a “sex mis-match” in approval systems. While HHS was not prescriptive in telling insurance companies how to address these issues as the most common barriers to coverage transgender people face, the agency was clear: “care delayed is care denied”.
  • Another unfortunately common experience transgender people faced and continue to face is “transgender broken arm syndrome”, a situation where a transgender person seeks routine medical care unrelated to their transition care but receives less than standard quality of care due to bias of providers. A real-life example I encountered in my advocacy includes a transgender woman seeking emergency care for trouble breathing. The patient was asked about her current medication use, including an estrogen, wherein she disclosed her identity as transgender. She was given two breathing treatments and sent home. The patient was not given a chest x-ray or other diagnostics to determine appropriate care. The patient returned the emergency room a few days later with pneumonia, a diagnosis she only received after having to insist on a chest x-ray. The Final Rule under the Obama Administration considered this type of treatment, no matter the setting, to be discriminatory in nature and a violation of the protections afforded under Section 1557.
  • According to the 2015 US Trans Survey, a work product from the National Center for Transgender Equality, 25% of transgender people experienced being denied routine or transition related care by their insurance provider, more than half of those seeking coverage for transition-related surgery were denied, and 25% of those seeking coverage for hormone replacement therapy were denied. The same survey also found that 33% of respondents who saw a healthcare provider experienced refusal of care, being verbally, physically, or sexually assaulted, or having to teach their providers about transgender people in order to receive appropriate care. Because these experiences are known among this community, 23% of respondents did not see a medical provider when the needed to out of fear of being mistreated. These findings are particularly worse for transgender people of color. Compounding fears of discrimination, potential refusal of coverage, and discrimination in employment, 23% of transgender people did not seek care when they needed it because they could not afford care.
  • In 2011, the Centers for Disease Control & Prevention ("CDC") revised HIV surveillance to include transgender people as a target population. In 2017, the CDC acknowledged transgender people as underserved and interventions for this community as understudied. The 2015 US Trans Survey found a self-reported rate of HIV among transgender populations of 1.6%, or FIVE TIMES that of the general population, with a self-reporting rate of 19% among Black transgender women.
  • In October 2017, HHS issued a new Conscience Rule, specifically targeting abortions, assisted suicide, and transition-related care. While not even daring to mention the word “transgender”, the agency couched the discriminatory Final Rule under the language of “sterilization”. Transgender advocates rightly fear the impact of codifying sanctioned discrimination in health care under the current administration. Rolling back the reach of Section 1557 as a protective provision would open the flood gates of claims of “religious liberty” to deny care and coverage to transgender people.
HIV service organizations and advocacy groups hold a unique opportunity to advocate for this highly marginalized intersection of HIV-positive, transgender people. As transgender advocacy organizations take to legal action to slow the tide of discriminatory action by the current Administration, HIV advocates would do well to seek ways to support the fight ahead, institute model policy for both transgender clients and employees, and work to provide a backbone of social and medical support for this community.

From community based agencies to State AIDS Drug Assistance Programs, identifying and educating legislators to advocating for expansive formularies, covering transition related HRT in both Ryan White Part A and B (ADAPs), the power of partnered advocacy cannot be understated. We cannot “get to zero” without addressing the needs of transgender people and we cannot address those needs without strong protections, combating systemic discrimination against transgender people.

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

Thursday, May 10, 2018

This New Insurance Loophole Could Affect People on HIV Meds, including PrEP

Guest Blog By: John Peller, President & CEO, AIDS Foundation of Chicago

Reprinted with Permission from AIDS Foundation of Chicago

Do you use a copay card to help pay for name-brand HIV drugs for treatment or PrEP? If you do, watch out: your insurance company might have a new policy that doesn’t let your copay card (a.k.a. your copay assistance card) help you afford your medications.

We’re talking about “copay accumulators” — policies some insurance companies are using that could make your health care more expensive, perhaps unaffordable. Read on for an overview of the problem and some steps you can take to make your medications affordable.

We are very concerned about the impact that these new insurance company policies will have on people’s health. We’ll do everything we can to fight them – but need your help. Are you having trouble getting medications because of insurance company policies? Tell us what’s going on by contacting We also recognized that insurance companies have put these policies in place because brand-name drugs are just too expensive. We’re committed to fighting for more affordable prices for life-saving medications.

What are copay accumulator programs?

Copay accumulators are relatively new policies that some insurance companies are using to stop counting drug company copay cards toward a person’s deductible or out-of-pocket maximum.  Note: These policies apply to drug manufacturer co-pay cards only, and not charitable assistance programs like the Patient Advocate Foundation, AIDS Drug Assistance Programs, or state-run programs that help pay for PrEP.

Which insurers are using copay accumulators?

Cigna, United Healthcare and pharmacy benefit managers CVS Caremark and Express Scripts have implemented these policies nationally for some plans. Warning: this list could grow.

Which medications are affected?

This new policy can apply to any brand-name drug with a copay program for any health condition, not just HIV for treatment or PrEP.

What does this mean for people in this situation?

Here’s where it gets complicated: Before copay accumulators policies were in place, the value of your copay card could be counted toward your deductible and out-of-pocket maximums. These cards could potentially save you a lot of money and make access to the health care you need easier and less stressful.

But if your insurance company has a copay accumulator policy and you are using a copay card to help pay for your medicine, when you reach your limit on the copay card, the total value on the card will not count toward your deductible or annual out-of-pocket maximum. If this policy is in place with your insurance company, you will need to pay your full deductible out of your own pocket before your insurance actually kicks in. This could mean that you’d be responsible for thousands of dollars to cover the cost of your health care and prescriptions.

Let’s walk through an example.

You start your new health plan year in January and you take a name-brand (non-generic) medication that costs $1,500 a month. Your plan has a $6,000 deductible (the amount you pay before the insurance plan starts paying for some care), and the deal is, you pay the full cost of all care (including drugs) before you meet your deductible. After you meet your deductible, your insurance company kicks in and starts paying for stuff.

The name-brand medication you take has a copay card, and that card is worth $6,000 per year. You use that copay card in January, February, March and April at the pharmacy to pay for your drug. By the time May arrives, your copay card has run out ($1,500 X 4 months=$6,000).
  • The old way (no accumulator): Previously, the insurance company would have counted what the copay card paid towards your deductible. In this scenario, your deductible would be fully met by using the card. So, depending on the details of your insurance, you might not have to pay anything after meeting your deductible, or you might have to come up with a small fee for your medication, or a small fee for other things like office visits.
  • The new way (with an accumulator): With a copay accumulator policy in place, the insurance company doesn’t count the amount of the copay card towards your deductible. When you go to fill your prescription in May, you will owe the full $1,500 cost of the drug, because your $6,000 deductible has not been paid down. You’ll need to keep paying the full cost of those  drugs yourself, out of your pocket, until you pay a total of $6,000 (four more months of drugs) and meet your plan’s deductible.
Will you be ready for an unexpected out-of-pocket cost?

We are very concerned that people may not know their insurance companies have changed their policy and may not be prepared to pay the full cost of their deductibles. While you might have received a letter from your insurer talking about copay accumulators, it may not have been completely clear what this new policy would mean for you.

So what can you do?
  • Consult your health plan materials or call your insurer to ask questions. If you have been affected by this type of policy and have had to switch to another drug or have been unable to fill your prescription, tell your insurer. Ask your insurer to waive the policy (it never hurts to ask).
  • Apply for help. The Patient Advocate Foundation (, Patient Access Network Foundation ( or similar organizations can help you get your HIV medications for treatment or prevention. If you’re taking PrEP, you can also get help from PrEP4Illinois (, a state program that provides free PrEP medications.
  • Tell us! We want to know about your experience so we can be better informed when we are advocating for you. Contact us at
  • Tell your employer, too. If you are employed and receive health insurance through your job, tell your employer. They may have adopted this program thinking of it as a cost-savings strategy without truly understanding the negative impact it could have on their employees.
Some helpful definitions:

The term accumulator refers to the running total of a person’s costs that apply toward their deductible and out-of-pocket maximum.

A deductible is the amount a person pays for health care services before insurance kicks in. For example, an individual with a $2,000 deductible would pay for their first $2,000 of care (including things like medications, office visits, lab tests) before health insurance begins to cover costs.

A copayment is a fixed amount a patient pays for a covered health service after they’ve paid their deductible. For example, you might pay a $20 copayment when you pick up medications at the pharmacy. Some insurance plans have copayments; some do not.

An out-of-pocket maximum is the most amount of money a person has to pay for covered services in a plan year. After this amount is spent on out-of-pocket costs (deductibles, copayments and coinsurance), a health plans pays 100% of the cost of covered benefits.

A high-deductible health plan is a plan with a higher deductible than a traditional insurance plan. The monthly premium is usually lower, but people pay more health care costs out of their own pocket before the insurance company starts to pay.

A pharmacy benefit manager is a third-party administrator of prescription drug programs contracted by health plans, employers and government entities to manage prescription drug programs.

A copay card can be provided by a pharmaceutical company (a.k.a. a manufacturer like Gilead) or a charity. These cards help patients afford the cost of their prescriptions. The amount of the patient’s copayment may be reduced or covered completely if they use a copay card.

Thanks to Cancer Support Community and The Arthritis Foundation for providing a version of this information.

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.