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, 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.