Reflections from an HIV Advocate's Journey: Tori Cooper

By: Tori Cooper, Founder and Executive Director of Advocates for Better Care Atlanta, LLC

What can I say? I can’t even remember the first time I heard of HIV/AIDS. But I can tell you when it first hit close to home. The way I remember, my mom’s cousin and father died on the same day; one in the morning and one that evening. That’s terribly traumatic. My grandfather died from hard living. He was an absolutely beautiful man with a gentle spirit and a body that couldn’t withstand years of unhealthy living. My mom’s cousin was different. He had lived what seemed like an amazing life in the Big Apple, with fur coats and beautiful cars and glorious apartments in the city. Yet on this very same day, both of their lives ended within hours of each other. Neither of their bodies could any longer handle the pain and decay that had ravaged both of their brilliant light. My grandfather died of organ failure and her cousin died of complications due to AIDS.

I was in middle school and had recently lost my virginity. I remember so vividly because my first time (this time really counted) was on a Saturday while Soul Train was on. My mom dropped me off at my boyfriend’s house (she didn’t know he was my BF) as she visited my grandfather in the VA hospital. Around this same time, my family had traveled from VA to NYC to visit her cousin. She described having to wear all kinds of equipment, that I imagined was like a space suit, just to enter his room. No one could actually touch him, but at least they were able to be kind of close to him and share this space – even if it was through hazmat gear. They way I remember, it was sad, but in my middle school aged mind, it seemed kind of cool too. Soon after these two events, two men whom my mom loved so much lost their lives. Another thing that’s so interesting is how I can remember that the one who drank and smoked himself to death, was honored in a military funeral where the entire family grieved and carpooled to Arlington National Cemetery for a full military home going. The other, who lived a rather fanciful, pristine and glorious life, died among innuendo, whispers and rumors. This was my introduction to HIV.

A few years later, I began to socialize with my new friends. This was all part of my “coming out” phase and I gained so much street smarts. The girls used to tell me, “You won’t get AIDS if you don’t mess around with white men.” And I believed them. That was my HIV/AIDS education. I remember seeing Black folks, who now would be called Trans and Queer, looking great on one Friday and looking like death by the following Friday. I remember when the same folks that we partied with just disappeared.  Eventually, word would get out that they died and that would be the end of it. At some point during the next few years, there were fundraisers at the clubs and folks selling dinner plates to make enough money to cremate our own. This was all part of my coming out years. It was just how life was at the time.

Fast forward, high school came and went. I got to college and discovered so many wonderful things, and sexually, I just flourished! I had my first real love and my first real heartbreak. By 1988, we all knew about HIV. I had actually been tested and received a false positive. This was at a time when it took weeks to get your results. For a short period of time, I figured my life would be over just like those same folks I partied with as an underage teenager in the clubs. For a short while, I didn’t think I had a future. I just imagined that no one would ever remember that I even lived on this earth. And then when I learned that first test was wrong, I was stunned once again. And then came 1989…

By the summer of 1989, I had already visited Atlanta, partied in New York and clubbed in DC. I had joined the military and was attending an affirming HBCU (Historically Black College/University) which made me even prouder to be Black and unique. 1989 proved to be a turning point in the way I saw the world and other people and especially in how I see myself. I learned some truths about myself and found out some inescapable truths that affect every aspect of my life even now. And by 1989, it was obvious what HIV was doing to folks who were just like me. These were folks I had partied with, fought with, made love with and socialized with since I was sneaking out of my parents’ house at 11 and 12 years old. Within the next few years, this plague would ravage Black clubs and queer Black communities. Folks that I consider friends JUST DIED. There wasn’t anything special about it after a while. They JUST DIED. Some had horrific deaths with hospital stays, and skin lesions and were just skin and bones. Others looked kinda sick but seemed to have dodged the bullet, but then suddenly the news was circulating through the community that we had lost another one. But somehow, in spite of 1989, I was still here. Not only was I here, but I was living my best life. But how and why???

Throughout the early 1990s, you could visibly see the plague taking over our communities. My socialization was in the clubs. I partied up and down the east coast – Club Bunz, Hypodrome, Paradox, The Tunnel, Webster Hall, Traxx DC and Tracks Atlanta, Loretta’s, The Tunnel, Scorpios, Equelitas, Octagon, Scandals, the Pyramid, Club Colours, Paradise Garage, Onyx and so many others. I screwed my way from city to city and had fun the whole time. I figured if this inevitable plague was gonna kill me too, I was gonna go out kicking and doing splits. I observed that the HIV epidemic took away all the sissies and punks from Black clubs. Those were my friends. They were the ones who always got the party started. Unfortunately, those were also the ones society falsely blamed for being HIV to Black communities. Well, they said it was punks and downlow men. Punks and sissies took the heat for the Black community. I’m not sure I was ever a sissy. But sissies and punks were my friends. I never thought of myself as a sissy or a punk. I just wanted to be a woman.  House music and Disco suddenly became associated with gayness and just like us, it died out. Men weren’t dancing with men in gay clubs anymore. Isn’t that crazy? The same men had been sissies suddenly were wearing Timberlands and sweatpants. Nobody wanted to be a sissy anymore. In Black communities and Black clubs, that meant you were a part of the problem. HIV was killing us and HIV stigma was killing those of us who didn’t die. I didn’t die even though I was expecting it. But it never happened. I’m still here. And so many others, who probably deserved to be here, didn’t make it. There must be a reason, and it would take me another twenty years to figure it out.

So fast forward, I’m living my life. My ex and I decided I was going to relocate back to Atlanta and we would live happily ever after. When that didn’t happen and we broke up, I was suddenly all alone and still alive. Hmmm aint that something? In Atlanta I saw that folks who were just like me were being victimized on public transportation just for being themselves. I saw that Black trans women were still dying because they weren’t engaged in healthcare like I was. I witnessed Black Trans women being denied jobs, even at places where I worked, because they didn’t look or sound a certain way. Being single, I saw that these men didn’t give a shit about us. It’s like people viewed us Trans women as disease ridden, paranoia driven, sexual oddities and not real people. Black Trans women were being killed and nobody cared. I had to do something about it because I was still here.

I swear to you that God revealed to me in a dream that I was supposed to be doing this work. I was in my 40s, single, Black, Trans and still alive, and He or She “called” me to do the work. So, I’m doing it. I’m doing it for all the punks and sissies and queens and queers who are not alive. I’m doing it for all those who died, when I didn’t. I’m doing it for all of US who are in this fight for health and financial equity and fighting systems of oppression. I’m not a martyr for being an HIV advocate. I’m just old enough and optimistic enough to think that I can make a difference in someone’s life. I’ve for the last 30 years when so many people didn’t. I’ve seen what death looks like. So if I can help one person, especially someone like me, to live to see a 30th birthday, and a 40th and 50th birthday, then I feel that I’m doing what I was called to do. I would be doing a disservice to myself and all of the communities that I represent if I didn’t continuously fight for all of us. This is all part of my journey.



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.

Navigating the Costs of HIV Care – Conversations, Resources & Patient Experience

By: Kathleen Gallagher, Senior Director Health Services Research, Patient Advocate Foundation

Today, many Americans struggle to afford needed medical care alongside their day to day financial obligations due to rising healthcare costs, which suggest a pressing need for timely interventions to assess the level of patient engagement in cost conversations to help mitigate financial stress. This need is even more pronounced among under-resourced individuals who also indicate they are less likely than higher-income individuals to receive the cost information they need. From a consumer perspective, cost information is only meaningful in the presence of other information related to risks and benefits, which allows individuals to make a value-based rather than price-based decision. Unfortunately, very little is known about how and from where individuals prefer to receive cost information relative to healthcare services, as well as how they intend to use the information.

While the impact of medical care costs are important to address, data reflects that patients diagnosed HIV/AIDS are at a higher risk for household material hardships including essential living expenses such as food, housing, utilities and transportation that become even harder to pay when financial resources are diverted toward essential healthcare costs. Therefore, comprehensive cost information must be incorporated meaningfully into care planning, along with information about treatment options and patient priorities, to truly drive value-based personalized decisions. For individuals at risk or diagnosed with HIV, high drug prices and high cost sharing health plans are the most frequently associated drivers of  financial toxicity. Often individuals must choose between their daily medication, putting gas into their car, a hot meal or other financial obligations. As a result, the cumulative effect of financial toxicity has been shown to negatively influence both treatment compliance and quality of life.

To best address the cost concerns of our patients, Patient Advocate Foundation (PAF) conducted two online survey assessments of patients to identify root causes of financial toxicity including preferences towards cost conversations, degree and sources of financial stress.

Across all demographic groups, HIV respondents report that healthcare costs created a financial burden, including:

• Fifty-eight percent indicated experiencing a financial hardship in the previous 12-months due to medical care, with 16% indicating they owed more than $5,000. 
• Oral medication (73%), office visits (40%) and laboratory tests (24%) were the main cost concerns. 
• Insurance related costs (76%) led to the most financial strain. 
• To address financial stress respondent’s:
• Reduced critical expenses (39%)
• Borrowed money from family/friends (34%)
• Paid utility bills late (23%) 
• Were unable to purchase groceries (20%)

Given these data, it is reasonable to assume that costs may impact overall health outcomes and life flow. These harmful tradeoffs are even more pronounced among under-resourced individuals. While costs should be discussed with all people, extra effort must be made for under-resourced individuals as well as for individuals with serious illnesses and conditions requiring high-cost treatments such as HIV.

Healthcare systems should consider ways to routinely initiate cost of care conversations with all individuals, to address patients’ reported desire for conversation and their need for greater healthcare related cost information. Take the following:

• Less than half (48%) of HIV patients had conversations with medical providers about care costs even though almost 80% indicated that these conversations were very important. 
• Respondents utilized their health plan (63%) or advocacy groups (27%) as alternative sources of cost information. 
• Almost 70% indicated that knowing out-of-pocket costs were extremely important when making care decisions and 41% wanted to have these conversations with their medical provider.

Managing the comprehensive costs associate with an HIV diagnosis or preventative medications will require a strategic approach to ensure that these therapies are accessible to the people most likely to benefit from them — a process that should rely on clinician-patient care planning, cost information, and cost conversations.   Individuals want more information on their healthcare costs as these costs often cause undue financial burden and force individuals into harmful tradeoffs. In addition, like any information related to the risks of a treatment, patients want and need to understand how the financial risk associated with their medical care can be avoided, mitigated, and managed. Fortunately, there are publically available resources to help patients with these cost conversations and with mitigating the impacts of financial toxicity.

PAF is a non-profit organization which provides case management services and financial aid to patients across America with chronic, life-threatening, or debilitating illnesses including HIV and access to HIV Prevention (PrEP). If you have questions or concerns around accessing or covering the costs of your medication, you can reach one of our case managers through our HIV, AIDS and Prevention CareLine (link below). Services are free of charge to the patient and can be provided in both English and Spanish.

• https://hivoraids.pafcareline.org/

Our website also hosts several useful tools that can be used by patients seeking information on access to HIV or prevention medication and facilitating cost of care conversations with their medical provider:

• https://www.patientadvocate.org/explore-our-resources/common-barriers-affordability/
• https://www.patientadvocate.org/explore-our-resources/interacting-with-physician/
• https://www.copays.org/diseases/hiv-aids-and-prevention

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.

When State & Local Public Health "Policies" Fuel HIV Stigma

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

For those of us living with HIV-infection the stigma associated with the condition is always evident. Always! It is visible on dating Apps with profiles using the word "clean" to describe serostatus; it is visible on certain pharmaceutical commercials with disclaimers that the medication doesn't protect against HIV (Viagra1, NuvaRing2); it is visible in the criminal justice system with archaic HIV Criminalization laws. But most troubling sometimes is when state and local health departments contribute to fueling HIV stigma with their reporting and health counseling policies. North Carolina (my home) is no exception.

First of all, let me begin by saying that I nothing but the utmost respect for the dedicated people who work in state and local health departments, including the North Carolina Department of Health & Human Services ("NCDHHS"). They often work tirelessly to promote public health, as well as ensure the delivery of the much-needed public health safety net programs designed to help people most in need. But that doesn't mean I cannot call a spade a spade when their reporting and health counseling "policies" do more harm than good.

Take for example what happened to me this week. The following summary captures how state and local public health "policies" can most certainly fuel HIV stigma:

__________

Every six months my Infectious Disease doctor (who is based in Washington, DC) shares my medical records and blood work with my Primary Care doctor in North Carolina. As such, it triggers contact by a public health counselor working at NCDHHS to discuss my health status. My health care is paid for by private insurance funded for by my employer, and not a state-funded program such as Ryan White or Medicaid, mind you. It seems to me that such "follow-up" activity funded by already limited public health budgets would be better directed at the underserved communities who we all acknowledge fall through the cracks of our public health system, such as formerly incarcerated inmates living with HIV/AIDS or transgender men and women living with HIV/AIDS. That's another argument for another time.

The NCDHHS public health counselor, who we will call "John Doe" as not to embarrass him, left me a voice message at 3:48 PM on Monday (04/29) saying,"I have an important health matter to discuss with you." Knowing what it was about, I went about my day and I didn't rush to return the call. Less than an hour later (52 minutes, to be exact), John Doe shows up unannounced at my apartment building (which has restricted fob access for the elevators). I wasn't home, so he entered the leasing office for assistance. According to the wonderful ladies working in the leasing office, John Doe proceeds to insist that they let him upstairs to my apartment after identifying himself as working with NCDHHS. They kindly declined, and text me to ask if I was expecting anyone from the state (...thinking maybe it was a social worker doing an adoption home visit follow-up). Upon replying to the leasing office that it was not any such adoption home study follow-up visit, they once again declined to grant access to the resident floors. Then, John Doe proceeds to leave with them a sealed envelope addressed to me (letter, as seen herein).

An unscheduled visit to my home, such as the one conducted by John Doe, is the sort of thing that fuels HIV stigma because it leads to whisper campaigns. Make no mistake, it was a compete invasion of my privacy under the guise of promoting public health. That is bullshit (excuse my language)! Fortunately, I'm very open about my HIV status with family, friends, colleagues, and strangers so John Doe's uninvited and unscheduled visit to my home had no negative repercussion. His visit, nonetheless, did lead to lots of questions and concerns by the apartment building's staff (...again, thinking it was adoption-related). Enter how rumors are spread, which can include HIV-related stigma.

Many people living with HIV-infection might not be able to say the same thing. In fact, I know for certain that MANY of my fellow brothers and sisters would have been in a very precarious situation if the local health department had invaded the privacy of their homes. Such moves should raise cautionary alarms not only for those of us living with HIV, but anyone fighting to end the epidemic.

The saga, unfortunately, didn't end there because John Doe would once again call me on Wednesday (05/01). Upon missing his call, I did return his call to address what had transpired earlier in the week. John Doe identified himself and then asked me to confirm certain identifiable information, such as my date-of-birth. Before starting his spiel, I told him that his health counseling was appreciated but not necessary and also thanked him for his time. But John Doe insisted on reading his spiel to me. Then, he asked me, "Are you planning to continue your care with the Infectious Disease doctor in Washington, DC?" My response probably wasn't expected by him. I simply said, "John Doe, with all due respect, I don't think that is any of your business nor is it the business of the State of North Carolina where I go for my health care." John Doe then had the audacity to call me "rude" and also remind me that I was living with a "communicable disease" - as if I had somehow forgotten about the HIV diagnosis given to me some 18 years ago. No shit, Sherlock (again, excuse my language)!

If rubbing my face in my HIV status doesn't fuel HIV stigma, then I'm not sure what does. Needless to say our conversation went downhill from there, and it ended with my hanging up on him.

__________

Don't get me wrong, I fully support policies aimed at linking patients to timely, appropriate care and treatment for any condition (including HIV). But the way some health departments, in general, and this public health counselor, in particular, handle their federal- or state-mandated responsibilities leaves a lot to be desired. I can only imagine how what happened to me would have played out with some of my brothers and sisters in marginalized communities. The fact is it DOES happen every single day across this country, especially in rural communities.

Photo Source: wehoville.com

Marcus J. Hopkins, who is also a long-term survivor and a respected public health policy consultant residing in rural West Virginia, agrees. Hopkins said, “In many Southern states and rural areas of the country, Ryan White providers, caseworkers, and staff are already trained to keep the identities of the AIDS Drug Assistance Program recipients hidden, going so far as to arrange off-site meeting places, mailing documents in nondescript envelopes, and going above and beyond to allow people living with HIV to maintain their privacy. State health departments, however, seem not to be as discerning or well-trained, with their focus being trained on preventing infections from spreading. These types of interventions, however, must be handled not with a crowbar, prying off the doors, but with a delicacy the employees often disregard.”

According to Eddie Hamilton, executive director of the ADAP Educational Initiative based in Columbus, Ohio, there is a rush to gather surveillance data and to get newly diagnosed individuals into care, along with genome exploration that expands the ability for public health officials to detect HIV outbreaks, all of the involved parties seem to forget the primary person’s privacy in all of the hoopla...THE PATIENT! Hamilton should know, because as an long-term survivor he has made a name for himself holding Ohio and healthcare providers accountable through successful litigation.

Hamilton's assessment of the HIV stigma implications go even further.

Under the new Federal “End to the Epidemic” initiative, State Health Departments nationwide are now willing to conduct involuntary unconstitutional DNA searches without informed consent or with a demonstration of appropriate safeguards that trample on constitutionally guaranteed privacy and due process rights. Patient’s CD4 counts are already being transmitted to the State Health Department by labs and many of them have no clue that this data has been transmitted by the lab outside of their health care provider/patient relationship. These data exchanges occur on all patients statewide (in many states) no matter who pays for their care (even private pay). Now, they want to expand those transmissions to include DNA sequencing.

"Until the HIV criminalization laws are rolled back, we cannot allow Health Departments to beat us further over the head with this granular data collection that could later be used against us in the future," argued Hamilton. "State Health Departments have devolved into data driven facilities as their grant dollars depend upon the data at the expense of a person’s privacy and the absolute right to know who has access to their personal health information data and how that data is used. It is incumbent upon Health Departments to design and implement the data collection process correctly with full articulation, transparency, data privacy safeguards and within the bounds of the law."

He further contends, new surveillance techniques such as molecular surveillance (i.e. Nucleoside Peptide Sequencing) and any other granular surveillances without informed consent will not withstand guaranteed State and Federal constitutional challenges as they are generally considered impermissible searches without a warrant (a requirement of the Fourth Amendment of the U.S. Constitution) unless a public health emergency has been declared. Many of the newer protocols also do not consider existing HIV Criminalization laws and how this granular information could be used in the prosecution of individuals.

With the recent privacy breaches of personal identifiable information in California, New Jersey and Ohio impacting people living with HIV/AIDS - including ADAP clients in these states - concerns over HIV stigma can never be overlooked or brushed aside. Though in my recent situation, John Doe didn't violate my confidentiality he most certainly creep his way into my privacy by showing up at my home...unannounced! Leaving a letter with leasing staff certainly could have further violated my privacy if someone other than me had opened it. And again, reminding me that I'm living with a communicable disease was a low blow especially coming from someone who purports to be a "counselor" by profession.

Interestingly enough, Ohio's Supreme Court seems to agree with the concerns expressed by myself, Mr. Hopkins, Mr. Hamilton, as well as countless people living with HIV/AIDS. The Ohio Supreme Court made it clear that purposes of the breach of medical confidentiality tort, the focus is on the patient's wishes, as "it is for the patient - not some medical practitioner, lawyer, or court - to determine what the patient's interests are with regard to personal, confidential medical information."3


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[1] McCann Erickson Ad Agency (2014). Viagra TV Commercial, 'Cuddle Up'. Retrieved online at https://www.ispot.tv/ad/7Ebe/viagra-cuddle-up.
[2] Ingenuity Studios. (2016). Monday Tuesday Wednesday. Retrieved online at https://vimeo.com/162745160.
[3] Biddle v. Warren Gen. Hosp., 86 Ohio St.3d 395, 1999-Ohio-115. Retrieved online at http://www.supremecourt.ohio.gov/rod/docs/pdf/0/1999/1999-Ohio-115.pdf.

CANN Hosts 3rd Annual Community Roundtable on Correctional Hepatitis

By: Marcus J. Hopkins, Policy Consultant

Reprinted with Permission from the Community Access National Network (CANN)

On Wednesday, April 17th, the Community Access National Network (CANN) hosted its 3rdAnnual Community Roundtable on Viral Hepatitis in Correctional Settings at the Pharmaceutical Research and Manufacturers of America (PhRMA) headquarters in Washington, DC. Their panel included three presenters: yours truly, along with Wayne  Turner (Senior Attorney at the National Health Law Program), and Todd Schwartz (National Account Director at Gilead Sciences, Inc.). Each presented touched on some facet of the myriad issues faced by inmates living in state correctional facilities, as well as various research efforts, funding mechanisms, and opportunities for improvement.

I presented on viral hepatitis in Correctional Settings, during which I focused on CANN’s two-year research effort focusing on HIV, Hepatitis B (HBV), and Hepatitis C (HCV) testing protocols in state prisons, as well as the declining per inmate cost of HCV treatments, and the state of HCV-related Class-Action lawsuits winding their ways through various courts.

Since 2017, I have been reaching out to Department of Corrections (DOCs) in every state and the District of Columbia on behalf of both CANN and the ADAP Advocacy Association to determine what are the state protocols for testing: Is testing compulsory (required), upon request, or based upon clinical criteria, is it conducted during or after the intake process, can inmates refuse to be tested, and is testing offered using an Opt-In (“informed consent”) or an Opt-Out (“informed refusal”) model of delivery. This research represents only a handful of national efforts to identify state correctional testing protocols and to determine whether or not these protocols will help the U.S. towards reaching its established goals of reaching elimination of HIV and HCV (both by 2030).

As of March 2019, all but seven states either responded to inquiries or had the protocols publicly posted on their respective states’ DOC websites (only 14 states, including two that responded, publicly post their testing protocols). Our findings determined that, while most states (n=34) do a good job of making HIV testing compulsory, only 11 states require HBV testing, and only 22 require HCV testing (Hopkins, 2019).

What is concerning about these findings is that, in Arizona, Alaska, Florida, Kentucky, Maine, and Massachusetts – all areas of the country where Injection Drug Use (IDU) is high, HIV testing is performed only upon request.

For HBV, the testing landscape is, for lack of a better word, “bleak.” Despite having a commercially available vaccine for HBV since 1981 (and recombinant vaccines since 1986), only 50 million adults and 70 million babies in America have received at least one dose of the vaccine since 1982 – roughly 37% of the American population (Immunization Action Coalition, 2017). Because, HBV is transmissible via sexual contact, as well as by IDU, the vaccination recommendations are considerably broad, but because the disease was so rare, physicians in more rural parts of the nation never bothered to vaccinate many Americans. As a result, the U.S. is seeing an increase in new HBV infections in places where the virus was largely absent. With only 11 states requiring HBV testing in state prisons, inmates face a greater risk of encountering this entirely avoidable, yet incurable disease.

For HCV, as the rates of new infections continue to climb, in all ten of the states with the highest rates of new infections, testing is either not compulsory, or there are no protocol data made available.

You can find my report at the following link: Viral Hepatitis in Correctional Settings.

Wayne Turner, Senior Attorney at the National Health Law Program (NHLP), presented on the various ways state Medicaid programs can and cannot be utilized to help cover to cost of treating incarcerated individuals. He discussed the various intricacies of how the Medicaid program defines “inmate” and “incarceration,” as well as issues surrounding eligibility during and after incarceration, linkage to Medicaid during the reentry process, and how Medicaid is structured.

You can find Mr. Turner’s report at the following link: Medicaid, Incarcerated Persons, and Hepatitis C Treatment.

Todd Schwarz, National Account Director at Gilead Sciences, Inc., provided us with an overview of the corrections system, Gilead’s efforts to help with education, HIV and HCV resource location services, education efforts, and statistics related to new infections and prevalence rates within the state correctional healthcare systems.

You can find Mr. Schwartz’s presentation at the following link: Community Roundtable on Linkages to Care for Incarcerated Citizens Living with Hepatitis C – Gilead Focus on Hepatitis C in Corrections.

Contact CANN to learn more.

References:

• Hopkins, M.J. (2019, April 17). Viral Hepatitis in Correctional Settings. Washington, DC: Community Access National Network. Retrieved from: http://www.tiicann.org/urls/2019_CANN_Presentation_1_Hepatitis_Corrections_04-17-19_HOPKINS.pdf
• Immunization Action Coalition. (2017, December). Hepatitis B: Questions and Answers. St. Paul, MN: Immunization Action Coalition: Handouts: Vaccine Index: Hepatitis B. Retrieved from: http://www.immunize.org/catg.d/p4205.pdf
• Schwartz, T. (2019, April 17). Community Roundtable on Linkages to Care for Incarcerated Citizens Living with Hepatitis C – Gilead Focus on Hepatitis C in Corrections. Foster City, CA: Gilead Sciences, Inc. Retrieved from: http://www.tiicann.org/urls/2019_CANN_Presentation_3_Hepatitis_Corrections_04-17-19_SCHWARTZ.pdf
• Turner, W. (2019, April 17). Medicaid, incarcerated persons, and hepatitis C treatment. Washington, DC: National Health Law Program. Retrieved from: http://www.tiicann.org/urls/2019_CANN_Presentation_2_Hepatitis_Corrections_04-17-19_TURNER.pdf

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.

HIV/AIDS Fireside Chat Retreat in California Tackles Pressing Issues

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

The ADAP Advocacy Association hosted an HIV/AIDS "Fireside Chat" retreat in Monterey, California among key stakeholder groups to discuss pertinent issues facing people living with HIV/AIDS. The Fireside Chat took place on Thursday, March 28th, and Friday, March 29th. The 340B Drug Discount Program, Medicare's Six Protected Classes ("6PC"), and the Ryan White HIV/AIDS Program ("RWHAP") were dissected by 20 diverse leaders in the fight against the HIV/AIDS epidemic.

Photo Source: Getty Images

The Fireside Chat included moderated white-board style discussion sessions on the following issues:

• 340B Program Reform: The Issues Spurring Discussion, Stakeholder Stances and Possible Resolutions, moderated by Jeffrey R. Lewis
• Medicare’s Part D Six Protected Classes: Proposed Changes Could Harm the Most Vulnerable Patients, moderated by Tim Vaske
• Ryan White Program: Ensuring the Sustainability of Community-Based Programs, moderated by Robert Skinner

The discussion sessions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Fireside Chat. The following represents the attendees:

• Evelyn Alvarez, Chronic Disease Prevention Coordinator, Monterey County Health Department (**unable to attend**)
• Tez Anderson, Executive Director & Founder, Let’s Kick ASS (AIDS Survivor Syndrome)
• Guy Anthony, President & CEO, Black, Gifted & Whole Foundation
• Jovan Antunovic, Senior V.P. and Chief Commercial Officer, Theratechnologies
• William E. Arnold, President & CEO of the Community Access National Network (CANN)
• Noel Chavez-Guizar, Medical Case Manager, Servicios de La Raza
• Hilary Hansen, Executive Director, Advocacy & Strategic Alliances (US), Merck
• Andrew Herbert, Policy Team, Gilead Sciences
• Hema Kapoor, MD, Medical Director, Infectious Diseases/Immunology, Quest Diagnostics
• Jeffrey R. Lewis, President & CEO, Legacy Health Endowment
• Shayna Linov, Fiscal Health Manager, HealthHIV
• Brandon M. Macsata, CEO, ADAP Advocacy Association
• Kassy Perry, President & CEO, Perry Communications Group
• Robert Skinner, President & CEO, Valley AIDS Information Network
• Brian Smith, Government Affairs, Biotechnology Innovation Organization 
• Kristen Tjaden, Community Government Relations Director, ViiV Healthcare
• Tim Vaske, Senior Director for Advocacy and Strategic Alliances, PhRMA
• Jennifer Vaughan, Founder, Facebook Women’s HIV+ Support Group
• LaWanda Wilkerson, patient advocate
• Marcus A. Wilson, National Policy & Advocacy Director, Johnson & Johnson

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

340B Program:

The discussion on the 340B Drug Pricing Program (hereafter "340B program") was facilitated by Jeffrey R. Lewis, who co-chaired the Community Access National Network's 340B Commission. Unlike all other federal health programs, the costs of the 340B program are born by the pharmaceutical industry. The 340B program requires pharmaceutical manufacturers that participate in Medicaid and Medicare (Part B) programs to provide discounts on covered outpatient medicines to nonprofit healthcare providers (Covered Entities) licensed to provide care under the 340B program. When the 340B program was created, many uninsured patients used hospital emergency rooms for primary care; nonprofit hospitals were often paying for the needed medications to keep the patient from showing up again; and, the cost impact on the hospitals was rising. Congress wanted to ensure that nonprofit healthcare providers could stretch limited dollars. So, the 340B program was designed to aid that effort.[1]

Much has changed in the healthcare landscape since the inception of the 340B program. As such the issues discussed included clarifying the purpose and intent of the 340B program. It asked tough questions, such as should Covered Entities be accountable for how they use 340B program savings, and has the program grown too rapidly or is it too large? It reviewed the growth of Contract Pharmacies, as well as duplicative discounts, and payer discrimination. What authority is needed to better manage the 340B program, and what about updating the patient definition (who are 340B patients) were also questions on the table.

The following materials were shared with retreat attendees:

• CANN 340B Commission’s final report 
• CANN 340B Commission’s background materials

The ADAP Advocacy Association would like to publicly acknowledge and thank Jeffrey for facilitating this important discussion.

6PC:

Tim Vaske, Senior Director for Advocacy and Strategic Alliances with the Pharmaceutical Research and Manufacturers of America ("PhRMA") opened the discussion with an analogy to Article V of the NATO treaty, whereby an attack on one member is considered an attack on all. The same can be said for 6PC!

Photo Source: The National Council

In Medicare Part D, the six protected classes policy protects vulnerable seniors and low-income beneficiaries with serious and complex health conditions, while also allowing Part D insurance plans to use the tools they need to control costs. Medicines for some of the sickest patients in Part D are covered within the six protected classes, including those for cancer, epilepsy, HIV/AIDS and mental illness.  Many of these conditions require patients to attempt a variety of therapies before they and their doctor settle on the most appropriate treatment, so there is no one-size fits all medicine for these conditions.[2]

Some background information was reviewed, including a description of the proposed rule and some of the rationale used by the U.S. Department of Health & Human Services ("HHS"), overview of prior authorization, and step therapy. The discussion challenged whether the price controls within the proposed rule which would potentially restrict access for patients, and asked about the impact the proposed rule could have for people stable on their medications, including people taking medications for HIV and/or mental illness. Finally, there was speculation about the potential timeline, if finalized.

Significant attention was dedicated to the ongoing 6PC advocacy efforts, especially since there is broad opposition to the proposed rule. Additional discussion focused on how the 6 PC proposed rule is counter to other Administration action around HIV prevention and treatment, as well as identified engagement opportunities.

The following materials were shared with retreat attendees:

• Partnership for Part D Access – Fact Sheet: CMS Proposal Erodes Patient Protections for Medicare’s Six Protected Classes
• Partnership for Part D Access – Comment Letter
• RealClearHealth, “Providers Should Call The Shots In Mental Health Care, Not Insurers” – Patrick Kennedy (3/6) 
• Miami Herald, “Trump Wants To End HIV Transmission By 2030. That Means, He Should Withdraw Proposal That Undercuts Treatment” – Smith & Acosta (2/19) (Equality Florida)

The ADAP Advocacy Association would like to publicly acknowledge and thank Tim for facilitating this important discussion.

Ryan White Program:

The Ryan White HIV/AIDS Program and Ryan White-funded supports and services have been the cornerstone of the public health system assisting underserved populations living with HIV-infection. Yet, Ryan-White-funded AIDS Service Organizations ("ASOs") and Community-Based Organizations ("CBOs") have increasingly found themselves challenged to remain financially solvent in today's rapidly changing healthcare environment. The unevenness of the Affordable Care Act's ("ACA") Medicaid expansion has made the challenge even more cumbersome.

The discussion centered on how ASO’s and CBO’s have the potential to play a significant role in changing from a disease model to a wellness model, with respect to the HIV care continuum. With that in mind, it asked what kinds of system changes are needed to incorporate more client concerns and improve service delivery? What pushback would result?

It is essential that Ryan White-funded ASOs and CBOs find new ways to thrive in a changing environment. Some of the conversation focused on what would these changes look like, as well as where they are already underway. Finally, some attention was directed to Administration’s recently unveiled plan to eliminate HIV/AIDS, while at the same time calling for an end to the ACA.

The following materials were shared with retreat attendees:

• Enhancing the Sustainability of Ryan White-Funded AIDS Service Organizations and Community-Based Organizations
• Health Systems Integration: Provider Sustainability
• HRSA: Goals and the Future of the Program 

The ADAP Advocacy Association would like to publicly acknowledge and thank Robert for facilitating this important discussion.

Additional 2019 Fireside Chats are planned in Detroit, Michigan, and Richmond, Virginia, and New York, New York.

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[1] Lewis, Jeffrey R. & William E. Arnold. (2019, March 28). The Federal 340B Program: A Call to Order. ADAP Blog. Retrieved online at https://adapadvocacyassociation.blogspot.com/2019/03/the-federal-340b-program-call-to-order.html.
[2] Johnson, Juliet (2019, January 31). New Research Shows Changes to the Six Protected Classes Would Harm Most Vulnerable Patients and Are Unnecessary. ADAP Blog. Retrieved online at https://adapadvocacyassociation.blogspot.com/2019/01/new-research-shows-changes-to-six.html.

Reflections from an HIV Advocate's Journey: David Pable

By: David Pable, Community Co-Chair, South Carolina HIV Planning Council

In June of 2002, I was ready for my life to end. I was married and had wonderful children, but I was unable to live the lie I had created by trying to live a straight life. I thought the only thing to do would be ending my pretend life.

During that next 6 months I met someone, and he encouraged me find a counselor and that helped me tremendously for a while. But, in January of 2003, he took his own life. I was devastated, obviously. He had helped talk me off of the ledge. I would have loved to have been able to do the same for him.

I found out the day after he passed away that he had HIV and by June a year later, I too, found out that I had HIV. Once again, I fell into depression and saw no hope for the future. There had been bouts with substance abuse that I kept secret and I had lived in state of denial for many years.

They say that time heals all wounds, and little by little and with a lot of help from the Ryan White Program in Charleston, SC, my excellent psychiatrist along with my therapist, I was able to piece things back together enough to want to live. It took about seven years for me to realize that one of the most tragic moments of my life had been the seed for change within me.

The clinic where I received care was forming a community advisory board and I was asked to chair it. I was so happy to be able to be part of this at the time and it also inspired me to be more present at other group events they held at the clinic. By attending such events, I met my partner, Rick. I remember thinking: he is not leaving here without my phone number! We have been together almost 7 years now.

I have volunteered at our local AIDS Walk and Art for Charity by donating some of my paintings. I found myself making more and more friends who were also advocates and together we joined the SC HIV Taskforce, and SC HIV Planning Council, of which I am the current Community Co-Chair.

In 2013, I went to the United Stated Conference on AIDS (USCA), held in New Orleans. I was blown away with how many advocates attended this event and really began to see how we can all inspire each other. So many people at this conference who at the time were strangers to me, have had an impact on my life in positive, productive and compassionate ways. I alone cannot do much in this world, but myself along with this patient and persistent group of advocates, we can change the world a little bit each day.

Author Carolyn Myss says: “Once we are awakened to something - a truth or injustice - we are held accountable and must take action according to that truth."

Once I returned from USCA, I really got involved with advocacy through the SC HIV Task Force by advocating at our State House for Medicaid expansion, as well as being involved with planning community forums around the state to educate the public on what Medicaid expansion would mean to the people of South Carolina. To date we have not expanded Medicaid, but I believe we should keep our eye on the brass ring…

I went to AIDSWatch in the early part of 2014 for the first time, and once again I was surrounded by a group of people from over 30 states who were there to talk to and advocate for people living with HIV.  I believe we had 12 people from South Carolina. I have been there multiple times since then and plan on going again in the future.

I have a few friends that I have been blessed with and we together have gone to events like HIV is Not A Crime, ADAP Advocacy Association Annual AIDS Drug Assistance Program Conference, and Positive Living Conferences. Each time, I learn from my peers about how I can become a better advocate.

I am very thankful to and have learned so much from the conferences over the last few years. There are so many things I have been able to bring back to our planning council and also to those in the community after attending these events.

Ghandi said “Be the change you wish to see in the world.” I think about this often and I thank God for giving me an opportunity to change and grow in positive ways, and I know he has done so through all the amazing advocates i have met over the years.



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.

Bipartisan lawmakers urge Administration to rethink proposed changes to six protected classes policy

By: Tom Wilbur, Director of Public Affairs, PhRMA

Reprinted with Permission from the Pharmaceutical Research and Manufacturers of America

At the end of 2018, the Centers for Medicare & Medicaid Services (CMS) introduced a dangerous proposed rule that would weaken the Medicare Part D six protected classes policy. The six protected classes policy covers patients whose conditions – like HIV, cancer, and epilepsy among others - are treated with medicines covered under six specific drug classes. The proposed rule would weaken the six protected classes policy by allowing increased use of step therapy or utilization management, including for patients already stable on a medicine. This practice is meant to reduce drug costs by requiring patients to begin treatment with a therapy preferred by the insurer before they can access the one their doctor thinks will work best for them.

Since the proposed rule was released, patient groups and advocates — particularly those representing patients with the diseases and conditions treated by medicines in these classes— have come out strongly against the proposed rule changes. Now, Members of Congress from both sides of the aisle are expressing their concerns as well because of the potential negative impacts on patients’ health.

Last week, a bipartisan group of 73 Members of Congress, led by Congresswoman Barbara Lee and Congressman Will Hurd, sent a letter to Health and Human Services Secretary Alex Azar asking the Secretary to withdraw a proposal that would modify the Part D program protections afforded to the six classes of drugs. The Members write, “We are concerned that prior authorization and step therapy requirements could have devastating public health outcomes for those receiving treatment of HIV and the additional five protected classes. Considering the public health implications of the proposed changes to Part D protected classes related to prior authorization and step therapies – we respectfully request that you withdraw the relevant provisions of the rule.”

The bipartisan Congressional Mental Health Caucus, led by Congresswoman Grace Napolitano and Congressman John Katko, also pushed back against the rule in a letter – signed by 39 Members of Congress – to Secretary Azar. The letter states, in part, that the proposed changes are “particularly worrisome” for Medicare beneficiaries living with mental illness.

In the Senate, Senators Marco Rubio and Krysten Sinema led a bipartisan letter alongside more than a dozen Senators outlining reasons the proposed rule should be reconsidered. In the letter, they note how the rule would not just adversely affect HIV patients but also cancer patients needing “highly personalized therapies;” schizophrenia and depression patients who “often struggle to find a medicine that works for them and could risk relapse if forced to switch to alternatives;” epilepsy patients who “often find that only one treatment works for them and any disruptions in treatment could increase the likelihood of seizures;” and organ transplant patients who have “complex medical needs and should not be required to jump through hoops in order to prevent transplant rejection.”

Bipartisan lawmakers, on both sides of aisle and on both sides of the Capitol, clearly oppose this proposed rule because for over 10 years, one of the cornerstones of the Medicare Part D program has been to ensure the sickest and most vulnerable patients have access to the clinically critical medicines they rely on. Letting plans restrict access for some of the sickest and most vulnerable Part D beneficiaries would reduce adherence to those medicines, jeopardize their health, increasing their need for medical care and result in poorer health outcomes and potentially higher costs for seniors and Medicare.

Visit PrescriptionForMedicare.org to learn more.

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.