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.

Thursday, May 3, 2018

Infographics Serve as Powerful HIV Advocacy Tools

By: Brandon M. Macsata, CEO, ADAP Advocacy Association
"Infographics are a powerful way of communicating information since they combine data and visual images – left brain and right brain – thereby making it easier to digest, remember and share information."[1]
Infographics are widely recognized as an important and powerful educational tool. In fact, online marketing has increasingly become saturated with infographics on a wide array of topics, including public health. Countless books, periodicals and blogs have been dedicated to this subject. According to the Wharton School of Business, infographics are more engaging and convincing because "presenters who used visual language were perceived by audiences as more effective than those not using visuals."[2] Thus, infographics can also serve as powerful HIV advocacy tools.

Why are infographics so effective
Photo Source:

AIDSinfo has made available an online library for their infographics. They include infographics on treatment options, prevention strategies, and general information about living with HIV.

HIV advocates would be well-served to leverage these infographics (and others) as visual advocacy tools, especially when meeting with policymakers at the federal, state and local levels. Infographics are an excellent way to condense a complex issue into a simple message. The ADAP Advocacy Association, in fact, has published numerous infographics and made them available to stakeholders. In April 2017, an infographic on transgender health was published on Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program.

The Centers for Disease Control & Prevention ("CDC") also offers many HIV-related infographics. CDC infographics and posters include various topics related to HIV including African Americans, Continuum of Care, Gay and Bisexual Men, HIV Testing, Latinos, Pre-Exposure Prophylaxis ("PrEP"), Women, and Youth. The AIDS Education & Training Center Program ("AETCP") has an robust library of these visual presentations on their website.

Last year, two powerful infographics complemented the 2017 National ADAP Monitoring Report when it was released by the National Alliance of State & Territorial AIDS Directors ("NASTAD"). One infographic, Key Characteristics of Ten ADAPs With Highest Rates of Viral Suppression, gives an analysis on ADAPs with the highest rates of viral suppression. The other one, Ryan White Part B and ADAP Partnership to Bolster Health Outcomes, gives an analysis on the Ryan White Part B and ADAP partnership. Anyone who has read NASTAD's annual report know how much data is shared in it, so these infographics provide an amazing snapshot.

Increasingly viral hepatitis is an emerging issue, as more people living with HIV/AIDS are also co-infected with Hepatitis C ("HCV"). The Community Access National Network ("CANN") has used infographics to tackle complex issues surrounding HCV. Among them are their infographics on HCV and Health Law In U.S. Incarceration Settings (2017), and Hepatitis C Therapies Covered by the AIDS Drug Assistance Programs (2015).

Effective grassroots communication and lobbying by HIV advocates can help to influence a position or outcome on a particular issue. Being sensitive to time constraints of policymakers is important, which makes using infographics even more important. The advocates who get the most value from infographics are those that see them as part of a wider strategy to support grassroots efforts at the federal, state, and local levels.

5 reasons why infographics work
Photo Source:


[1] Aleksejeva, Nika (2015, September 6). The Power of Infographics: Why, What and How. Infogram. Retrieved from
[2] Long, Jonathan (2014, September 23). The Power of Visual Content [Infographic]. Market Domination Media®. Retrieved from

Thursday, April 26, 2018

Our Commitment to Transparency

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

Transparency is a word often used, but equally often abused. A prime example is what transpired with the now defunct National Association of People With AIDS ("NAPWA"). Since the birth of the ADAP Advocacy Association in July 2007, transparency has been a core guiding principle of our organization and its advocacy activities. Personally, I take great pride in the fact that we share an abundance of information  including financial information  about our organization with stakeholders.

Ironically, I had planned to blog about our commitment to transparency, but that decision was reinforced after a (contentious) conversation with a colleague whom I respect, but disagree with from time to time. In an era where "facts" are often fake, these facts are indisputable.

Photo Source:

Several weeks ago, an important question was posed in a report released by Kaiser Health News. The report — Patient Advocacy Groups Take In Millions From Drugmakers. Is There A Payback?  aimed to "expose Big Pharma’s ties to patient groups." It boasted about a national database of 1,215 patient advocacy organizations that received money from the drug companies who KHN tracked in 2015. The ADAP Advocacy Association was not among the organizations in the database, however. Our annual budget is probably so small that it didn't warrant the effort to include us.

So...let me save everyone the suspense. We proudly list our supporters on our website, and also make available information about our corporate partnership levels on our website. This information is exactly what we share with any potential funder of our organization, so there is no smoke and mirrors. We also proudly list all of our financial supporters in our Annual Report, which is also available on our website.

The ADAP Advocacy Association receives no taxpayer funding. All of our revenue is generated from individuals, corporations, foundations, and nonprofit organizations.

In 2017, our revenue as reported to the Internal Revenue Service was $279,392.39; it was derived from numerous sources  including corporate partnerships, awards dinner sponsorships ($1,000.00), conference registration fees ($199.00), training fees ($50.00), exhibit fees ($1,000.00), scholarship fund donations (ranging from $5.00 to $5,000.00), and miscellaneous donations. Approximately 68.61% were donations received from pharmaceutical companies and/or affiliated groups. That means $87,702.39 of our funding came from non-pharmaceutical sources. As the organization's CEO, one of the goals over the last decade has been achieving greater funding diversification because it is consistent with a sound business model.

That said, our top five pharmaceutical funders last year were Gilead Sciences (12.35%), Merck (11.63%), Janssen Pharmaceuticals (9.31%), ViiV Healthcare (8.59%), and AbbVie (8.05%). Our top five non-pharmaceutical funders were AIDS Healthcare Foundation (4.01%), Community Access National Network (3.76%), Ramsell Corporation (3.58%), Walgreens (3.58%), and Housing Works (1.79%). In total, we garnered the financial support from thirty-three (33) corporate entities (which was our best year to-date).

Our top individual donor was yours truly. Last year, I personally donated $16,119.65 to the organization.

The first few years after we launched the ADAP Advocacy Association, pharmaceutical company donations accounted for approximately 90%+ of our annual revenue. We never once hid this fact. The only non-pharmaceutical revenue came from the Oakland, California-based Ramsell Corporation. Our first pharmaceutical partner was Janssen Therapeutics (then, Tibotec Therapeutics). Today, one in every three dollars is generated from sources outside of the industry.

Over the years, we've approached countless corporations, foundations, and organizations seeking their financial support for our efforts to increase access to care and treatment for people living with HIV/AIDS. Each one had a history of supporting HIV-related initiatives.

We've been declined by the Elton John Foundation (numerous times). We've been declined by the Ford Foundation (numerous times). The Robert Wood Johnson Foundation declined, as did the Walmart Foundation. Chevron was a strikeout. Kenneth Cole Productions, nope. Macy's was another flop. Target Corporation, too. And Levi Strauss & Co. And Starbucks (note: on several occasions Starbucks donated $5 gift cards for our conference bags). Now that my pride is wounded sharing only a handful of the letdowns, there should be a clearer picture painted for any remaining doubters about our attempts to achieve funding diversity.

The reality is simple. Without financial support from our pharmaceutical partners, small patient advocacy organizations could not and would not exist...including ours! I'm not ashamed or embarrassed by the support from our pharmaceutical partners, or the support from the many other funders either. Ironically, we've been criticized numerous times by other advocacy groups for accepting financial support from AHF. I'm also proud of the support that their organization has lent us. In fact, we proudly listed every single corporate donor in last year's blog, 10 Years of Accomplishment, Advocacy & Access to Care.

Some of our non-industry funders have included Bender Consulting Services, Flowers Heritage Foundation, Great Lakes ADA Center, MedData Services, Philadelphia FIGHT, Public Sector Solutions, Southwest Airlines, SunTrust Bank, and Wells Fargo. And yes, we have received considerable support from our pharmaceutical partners — and their support has been equally valued.

In fact, in the 11 years since our Articles of Incorporation were filed in the District of Columbia, not once has a pharmaceutical company demanded or requested a quid pro quo in return for its financial support. Let me repeat...not once!

...demanded support for pending federal or state legislation? Nope.

...nudged us to oppose potentially harmful regulation to the pharmaceutical industry? Never.

...requested allegiances for pro-big Pharma policies? Not even that one.

And let me be equally clear, on occasion the ADAP Advocacy Association has taken a very public stand on issues contrary to our pharmaceutical partners, and again...not once did a single one of them retaliate by withdrawing support. Therefore, speaking alone for our organization there is no direct or implied payback, or conflict-of-interest established by accepting their support.

Respect is earned, and our organization has earned the respect of its funders because they recognize the valuable contributions we make to patient advocacy. And...we will continue to do so. Case closed...

Respect is earned not demanded or bought
Photo Source: Keep Calm Network Ltd.

Thursday, April 19, 2018

ADAP Open Drug Formulary Programs Improve Access to Care & Treatment; So why are there so few?

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

Each State AIDS Drug Assistance Program ("ADAP") is unique in that "it decides which medications will be included in its drug formulary, and how those medications will be distributed to eligible consumers."[1] It clearly presents a conundrum between payers and consumers. Ask any payer of health benefits, and controlling costs is probably paramount to them. Ask any consumer of health benefits, and most important is the unrestricted access to all the supports, services and/or therapies that should be afforded to them. Therein is the divide between closed and open drug formulary programs, including ADAP.

(Editor's Note: This blog is not intended to be an endorsement of any product made by any pharmaceutical company but rather acknowledge the unique health needs experienced by people living with HIV/AIDS, as they attempt to access care and treatment that is appropriate, culturally competent, and timely)

Two pills, one with a thumbs up and one with a thumbs down
Photo Source: COMP Blog

In March 2015, Managed Healthcare Executive published an article, Closed formularies hold the line on costs, which accurately summed up the challenges faced by health plans. Though health plans are quite different from State AIDS Drug Assistance Programs, in general, they nonetheless do share an important thing in common. They often employ cost containment strategies in an effort to not only control costs, but also ensure plan sustainability. It provides little comfort, however, for consumers living with chronic health conditions, such as HIV/AIDS, who require access to numerous drug therapies.

According to the National Alliance of State & Territorial AIDS Directors ("NASTAD"), only approximately one in five (1:5) ADAPs employ an open drug formulary program. The Online AIDS Drug Assistance Program Formulary Database (2018 version) reports the following states offer open drug formularies: Illinois, Iowa, Massachusetts, Minnesota, Nebraska, New Hampshire, New Jersey, Ohio, Oregon, and Washington State. Only Washington State reports no drug exclusions under its open drug formulary program.[2]

To be fair, ADAPs aren't unique in this area. ADAPs mirror private health plans (and many other public health plans) in that they have closed drug formularies. Yet, open drug formulary programs are advantageous to consumers because they provide additional coverage for medications. So why are there so few?

The Ryan White HIV/AIDS Treatment Extension Act of 2009 (Public Law 111-87) dictates that "each ADAP must cover at least one drug from each class of HIV antiretroviral medications ("ARVs") on their ADAP formulary. RWHAP funds may only be used to purchase FDA-approved medications."[3] Otherwise, State ADAPs are pretty much left to their own fruition on which ARVs to include on their formularies, as well as non-ARV medications to treat other conditions and medication side effects.

Eddie Hamilton, founder of the Ohio-based ADAP Educational Initiative, summarized his support for open drug formulary programs:
“One of the leading barriers to care is the lack of access to the non-ARV medications for various reasons, such as co-pays or non-covered medications. Open formularies enhance ARV regimen compliance as it enables people living with HIV/AIDS to deal with the various side effects and co-morbidities associated with HIV. While the Ryan White program covers mostly HIV related services, it is counter-intuitive to fix only one medical issue while leaving other potential life threatening medical issues that would be preventable on the table. One may have a undetectable viral load but succumb to a heart attack because of the lack of access to a statin!”
It is disheartening when people living with HIV/AIDS are denied access to numerous non-ARV medications, especially when the medications could treat a litany of other health-related conditions. Some of the conditions commonly identified by consumers are lipodystrophy, diarrhea, hormone therapy, and co-infection with Hepatitis C ("HCV").

For example, HIV-related lipodystrophy remains an important health issue confronted by consumers yet often it is characterized by payers as cosmetic. Research has shown that between 20% and 30% of HIV-positive patients are experiencing excess visceral adipose tissue ("VAT"). For years, there's been a common misconception that this belly fat is just a physical cosmetic issue that is a side effect of earlier HIV treatments  something that must be accepted as a reality of now living longer with HIV-infection. Recent research dispels that myth so that even with newer anti-retro viral regimens this condition continues to exist.

An ADAP Blog posted in late 2016 highlighted the success by Massachusetts in expanding treatment options for people living with HIV-associated lipodystrophy. The Treat Lipodystrophy Coalition fought tirelessly for the law to require insurance coverage for treatment of a debilitating and disfiguring side effect of HIV medications. Patients living with HIV-associated lipodystrophy are now demanding the same is done with public payers, such as ADAP and Medicaid.[4]

Treatment for Lipodystrophy - It's Now the Law!
Photo Source: Treat Lipodystrophy Coalition

Carl Sciortino, executive director for the AIDS Action Committee, and former representative in the Massachusetts Legislature who introduced the aforementioned legislation, then summarized the effort to expand treatment access: "Some of our long-term survivors carrying the physical scars of earlier life-saving treatments have been denied the dignity and medical treatment they are entitled to for far too long. Lipodystrophy affects our veterans, and as a country we have effectively turned our backs on their need to treat their epidemic-inflicted wounds. I'm proud of our step forward in providing insurance coverage in Massachusetts, and I'm grateful for any interest it sparks in providing care to people living with HIV across the country."[5]

Tesamorelin (common brand name: Egrifta) is the only FDA-approved therapy to combat HIV-related lipodystrophy. Yet, as of December 31, 2017, only 11 ADAPs reported that they do include Tesamorelin on their drug formularies, including: Colorado, District of Columbia, Illinois, Louisiana, Massachusetts, New Hampshire, New Jersey, North Carolina, North Dakota, South Carolina, and Washington. Thanks to the ADAP Crisis Task Force, that soon could be changing after a discounted drug pricing agreement for ADAPs was reached with the drug's manufacturer.

One of the most common side effects causing angst for people living with HIV/AIDS is diarrhea. It is a widely held opinion that HIV-related diarrhea is a thing of the past with the advent of the newer ARVs. The "runs" impact long-term survivors quite often, according to a patient survey released in December 2017.[6]

Josh Robbins, Founder of the HIV Scoop, isn't known for being shy, and as such he become a vocal spokesman on how this common HIV-related side effect personally impacted his life. His advocacy on the issue has given hope to others like him. Robbins characterized the struggle as follows:
“Before I found the drug to help normalize my gastro issues related to living with HIV, I was at a crossroads with HIV treatment. Everyone preached the importance of adherence to ARVs and staying in care, but I was exhausted of the process because of diarrhea and me not finding relief from it or support medically. When I saw the information on the drug, I knew I wanted to give it a try. What could I lose as I tried everything else? After starting it, there wasn’t a magic moment that I knew it was working for me—but I did notice that I didn’t dread taking my ARVs anymore and I stopped missing doses because they made me feel bloated and the diarrhea was brutal. All of that slowed down to where I don’t even think about it anymore. Can I give all the credit to this drug? Maybe not, but I can say that I finally feel normal in my stomach, I don’t spend tons of time in the bathroom anymore, and I’m finally adherent to my HIV meds. At least for me, this drug makes my journey living undetectable possible, because it normalized my gastro issues. So, yea, this drug changed my journey living with HIV.”
The medication in reference is Mytesi. Unfortunately, currently only 22 State ADAP drug formulary programs cover Mytesi, and as such people living with HIV/AIDS suffering from diarrhea are forced to rely on less potent over-the-counter therapies. These therapies often provide little or no relief. Once again, thanks to the ADAP Crisis Task Force, that soon could be changing after a discounted drug pricing agreement for ADAPs was reached with the drug's manufacturer.[7]

Evidence suggests that HIV-infections disproportionately impact the transgender communities.[8] In its recent issue brief on transgender health, NASTAD acknowledged the need to adopt a holistic approach to providing health services to this underserved population. The issue brief reads, in part, " is imperative that ADAPs ensure that their interventions are informed by a robust understanding of the unique personal, societal, and structural barriers that impede access to care and treatment for transgender people."[9]

The Centers for Disease Control & Prevention (CDC) has documented the unique needs set facing the transgender communities in the United States. CDC data suggests there is a need for gender-variant, culturally competent awareness and guidelines designed to better serve this underserved community enrolled in public health programs, as well as those persons eligible, but not enrolled (including ADAP).[10]

The CDC concluded, “Insensitivity to transgender identity can be a barrier for those who are diagnosed with HIV and seek quality treatment and care services. Research shows transgender women with diagnosed HIV infection are less likely to be on antiretroviral therapy (ART) or achieve viral suppression. Furthermore, few health care providers receive adequate training or are knowledgeable about transgender health issues and their unique needs.”[11]

Furthermore, NASTAD echoed this concern in its issue brief, making a compelling case for open drug formulary programs that are more liberalized to serve transgender consumers: "ADAP formulary composition presents another opportunity to promote trans- inclusive care and treatment. Beyond the provision of ARVs, ADAPs play a critical role in supporting the availability of medications for many co-occurring needs of PLWH, including transgender transition-related medications."[12]

As of December 31, 2015, unfortunately only 16 ADAPs covered one or more FDA-approved transgender transition-related medications on their formulary.[13]

According to Marcus J. Hopkins, Project Director of the Community Access National Network's HIV/HCV Co-Infection Watch, there are 43 State ADAPs offering some form of coverage for HCV treatment. Of those programs, 36 have expanded their HCV coverage to include the regimens that serve as the current Standard of Care (SOC) for Hepatitis C treatment. Eight (8) programs offer only Basic Coverage and 13 programs offer No Coverage. Three (3) territories – American Samoa, Marshall Islands, and Northern Mariana Islands – are not accounted for in this data.

HCV is a common co-infection in people with HIV/AIDS. An estimated 200,000-300,000 people in the United States are co-infected with both HIV and HCV infections. Experts believe that about 25% of Americans with HIV also have HCV; conversely some 10% of people with HCV are thought to also have HIV.

In most states, people living with HIV/AIDS are well served by their ADAP but that doesn't mean consumers should settle on the status quo. According to Jen Laws, an independent policy consultant and an ADAP Advocacy Association board member, expanding the efficacy of the State AIDS Drug Assistance Programs requires both modernization in systems and expansive formularies to meet the health needs of target populations; from heart disease and diabetes to gender confirming hormone replacement therapies, ADAPs can help us close the gaps in care clients face else where and realize the true potential of the programs in working to end HIV.

Laws argued, "Today, we understand comprehensive approaches to chronic health needs result in greater client adherence and positive overall health outcomes, directly impacting efficacy of HIV specific treatment. We know meeting target population health needs is a necessary step in combating the epidemic, especially in an environment where these same populations are unlikely to get their health needs met in traditional markets. In the age of treatment as prevention, ADAPs have a unique opportunity to function at the corner of both prevention and patient care."

Related articles of potential interest:


[1] Health Resources & Services Administration (2017, October). Part B: AIDS Drug Assistance Program. U.S. Department of Health & Human Services. Retrieved from
[2] National Alliance of State & Territorial AIDS Directors (2018, February 1); 2018 ADAP Formulary Database; National Alliance of State & Territorial AIDS Directors (NASTAD). Retrieved from
[3] Health Resources & Services Administration (2017, October). Part B: AIDS Drug Assistance Program. U.S. Department of Health & Human Services. Retrieved from
[4] Macsata, Brandon M. (2016, October 28). ADAP Blog. Why HIV Medical Treatment Guidelines Matter. ADAP Advocacy Association. Retrieved from
[5] Macsata, Brandon M. (2016, October 28). ADAP Blog. Why HIV Medical Treatment Guidelines Matter. ADAP Advocacy Association. Retrieved from
[6] Yahoo Finance (2017, December 12). HIV With Diarrhea Often Suffer in Silence. Business Wire. Retrieved from
[7] Yahoo Finance (2017, April 10). Jaguar Subsidiary Napo Pharmaceuticals Signs Agreement with the ADAP Crisis Task Force for Mytesi. Business Wire. Retrieved from
[8] U.S. Centers for Disease Control and Prevention (2016, April 18). HIV Among Transgender People. Retrieved from
[9] Pund, Britten, Et al. (2016, August). CROSSROADS: ADAP CONSIDERATIONS FOR TRANSGENDER HEALTH. National Alliance of State & Territorial AIDS Directors. Retrieved from
[10] U.S. Centers for Disease Control and Prevention (2016, April 18). HIV Among Transgender People. Retrieved from
[11] U.S. Centers for Disease Control and Prevention (2016, April 18). HIV Among Transgender People. Retrieved from
[12] Pund, Britten, Et al. (2016, August). CROSSROADS: ADAP CONSIDERATIONS FOR TRANSGENDER HEALTH. National Alliance of State & Territorial AIDS Directors. Retrieved from
[13] Pund, Britten, Et al. (2016, August). CROSSROADS: ADAP CONSIDERATIONS FOR TRANSGENDER HEALTH. National Alliance of State & Territorial AIDS Directors. Retrieved from

Friday, April 13, 2018

Grindr Fuels HIV Stigma & Fails the Most Basic Privacy Test

Guest Blog By: Marcus J. Hopkins, Blogger

Just last month, in March 2018, Grindr’s Director for Equality, Jack Harrison-Quintana, announced that the app would roll out a new feature: men who opted in would receive a reminder every three to six months to get tested for HIV, as well as receive the location information of the nearest testing site (McNeil, 2018).  “…few men will download health-oriented apps that make them feel shamed for missing a test,” Harrison-Quintana claimed. For the uninitiated, Grindr is a gay male hookup app that allows users to connect with others via their mobile devices. Users have the ability to include as much or as little personal information as they wish when creating and editing their profiles, including their HIV status and “last tested date.”

What he failed to mention, however, was that users’ HIV status with not one, but two other outside companies.

Grindr Privacy Statement
Photo Source:

The two companies – Apptimize and Localytics – have been receiving some of the information that Grindr users choose to include in their profiles, including their HIV status and “last tested date” (Ghorayshi & Ray, 2018). BuzzFeed, who broke the story on April 02, 2018, independently verified a data analysis conducted by an outside research firm, SINTEF, who was commissioned to produce the report by Swedish public broadcaster, SVT, which first published the findings (Ghorayyshi & Ray).

This is just the latest HIV status-related debacle in recent years. In August 2017, the Community Access National Network’s HEAL Blog wrote about the inadvertent exposure of clients’ HIV status by insurance giants, Aetna and CVS/Caremark (Hopkins, 2017). Aetna, in January 2018, agreed to pay $17 million for their data breach that exposed that as many as 12,000 clients were taking HIV medications (Gordon, 2018). A Federal lawsuit was recently filed over CVS/Caremark’s release of protected client information when the company created a program identification number for each client with the letters ‘HIV’ in the number (Snell, 2018).

These kinds of breaches of privacy and public confidence should be easily avoidable. In 2018, it is so rare for other Western countries to inadvertently expose others’ HIV status, that it almost never occurs. When we hear of these stories, they frequently involve companies based in the United States, in no small part because of how lax are the repercussions for this kind of exposure. On the part of Aetna, sheer laziness led to the exposure of clients; with CVS, stupidity seems to be the cause. With Grindr, however, there are more pernicious factors at play, and honestly, there are likely to be few legal repercussions for the company in the U.S., because of our extremely lax privacy laws.

In 2017, the U.S. House of Representatives voted to repeal an Obama-era law that demanded ISPs obtain permission to share users’ personal information (Lee, 2017). While this law pertained only to ISPs and not other companies like Facebook or Google, the sentiment is clear: your personal information is up for grabs. Many European nations have incredibly strict privacy laws that require explicit informed consent before sharing any data with third parties; the U.S., however, favors a stupidly “free market,” where the sentiment is “Caveat Emptor” – “Let the buyer beware.”

Stop Stigma (with HIV/AIDS Red Ribbon)
Photo Source: Pinterest - AIDS/HIV HISTORY

This latest revelation that Grindr was sharing data likely isn’t illegal, in the same way that Facebook sharing data with Cambridge Analytica likely isn’t illegal. For people living with HIV, these kinds of data sharing arrangements help to create and perpetuate fears that their private information will be exposed to others without their direct knowledge. Our laws and system allow companies like Grindr and Facebook to post miles-long user agreements filled with legalese that is barely comprehensible to people with college education, much less those who just want to hop on an app and hook up with the nearest person they consider hot.

It’s time for a rethink in our country of how our personal information is protected, because right now, the deck is wholly stacked against us.

  • Ghorayshi, A. & Ray, Sri. (2018, April 02). Grindr Is Letting Other Companies See User HIV Status And Location Data. New York, NY: BuzzFeed, Inc.: BuzzFeed News. Retrieved from:
  • Gordon, E. (2018, January 17). Aetna Agrees To Pay $17 Million In HIV Privacy Breach. Philadelphia, PA: National Public Radio: WHYY Philadelphia: Shots. Retrieved from:
  • Hopkins, M.J. (2017, August 28). HIPAA: Healthcare mailers violate privacy rights of people living with HIV. Washington, DC: The Community Access National Network: HEAL Blog. Retrieved from:
  • Lee, D. (2017, March 29). Anger as US internet privacy law scrapped. Los Angeles, CA: BBC News: Technology. Retrieved from:
  • McNeil, D.G., Jr. (2018, March 26). Grindr App to Offer H.I.V. Test Reminders. New York, NY: The New York Times: Health: Global Health. Retrieved from:
  • Snell, E. (2018, April 03). Federal Lawsuit Filed Following Alleged CVS Health Data Breach. Danvers, MA: Xtelligent Medica, LLC: HealthIT Security: News. 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.