CMS Co-Pay Accumulator Rule Aims to Increase Consumer Costs

By: Marcus J. Hopkins, Policy Consultant & Guest Contributor

Co-Pay Accumulators are management tools used by health insurance companies, Pharmacy Benefit Managers (PBMs) and other health plans that excludes co-pay assistance coupon and program payments from counting toward patients’ deductibles (Schweitz, 2019). The Centers for Medicare & Medicaid Services (“CMS”) recently promulgated new rules potentially excluding drug manufacturer co-pay assistance programs towards patient out-of-pocket cost sharing and deductibles.

I wrote about this issue, last September, for the ADAP Advocacy Association (read blog, here), and have been asked to take another look at this issue after CMS decided, after some deep soulless searching and poor timing, to put this program fully into place in the middle of a pandemic outbreak.

Here is the rule in question:

1. See, Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2020, Final Rule, 84 Fed. Reg. 17454 (April 25, 2019) (the “Final Rule”).2. 45 C.F.R. § 156.130(h) reads in its entirety as follows:“(h) Use of drug manufacturer coupons. For plan years beginning on or after January 1, 2020:(1) Notwithstanding any other provision of this section, and to the extent consistent with state law, amounts paid toward cost sharing using any form of direct support offered by drug manufacturers to enrollees to reduce or eliminate immediate out-of-pocket costs for specific prescription brand drugs that have an available and medically appropriate generic equivalent are not required to be counted toward the annual limitation on cost sharing (as defined in paragraph (a) of this section).”3. In general, “accumulator programs” are a relatively recent component of pharmacy benefit designs offered by many health insurers and PBMs for commercially insured enrollees. Accumulator programs track utilization of drug manufacturer-sponsored copay or other assistance to ensure that the drug manufacturer contribution no longer counts toward an enrollee deductible. Accumulator programs tend to reduce the health insurers’ or plan sponsors’ overall contribution to the total spend on high-cost branded prescription medications as opposed to shifting more cost toward them when accumulator programs are not in effect. There are many variations of these programs depending on plan design and other factors.4. See, Final Rule at 17544 - 17545.5. See, The Center for Consumer Information & Insurance Oversight, Affordable Care Act Implementation FAQs - Set 12, Q1 and Q2 (February 2, 2013), and Affordable Care Act Implementation FAQs - Set 18.

Looking for a bit more insight, I turned to JD Supra, a great source of press releases and legal analysis for those looking at government rules and regulations. Here was their finding in May 2020:

The Final Rule states that consistent with specific state law, coupons, and copay cards offered directly by drug manufacturers may be, but are not required to be, counted towards a patient’s annual cost-sharing limit under the plan. This is a notable change from CMS’ prior proposal that would prohibit copay accumulator programs for branded drugs without therapeutic alternatives. (Fox, Atkins, & Trunk, 2020)

Essentially, what a co-pay accumulator attempts to do is increase the amount of money consumers pay in order to decrease the amount of money insurers have to pay, once their annual deductible and/or Out-of-Pocket Maximum (OPM) is met. When consumers are allowed to count co-pay assistance cards against their deductible/OPM, they reach those limits sooner, meaning that insurers are then on the hook for every pharmaceutical fill after that date.

But the rule change at CMS is trickier than that, according to another JD Supra author:

"In conclusion, the Final Rule prohibits individual market, small group, large group and self-insured group health plans from using accumulator adjustment programs only when there is no generic for a branded pharmaceutical.  However, under federal law, all such health plans may continue pharmacy benefit designs which do not count manufacturer coupons toward an enrollee’s maximum out-of-pocket cost sharing (a) when there exists a generic equivalent for a branded drug, and (b) under any circumstances, for more expensive biologics. 

Still, as a final cautionary note, please keep in mind that the Final Rule, by its own terms, does not pre-empt state laws. Some states are considering or have passed legislation that may prohibit the use of accumulator programs regardless of the availability of generic substitutes. However, such state laws, if passed, may be limited to health insurers and may not be able to reach self-funded group health plans which are governed by ERISA. Thus, those subject to the Final Rule must remain cognizant of similar laws in the states in which they offer health benefit plans. (Hanna, 2019)."

The problem with this issue is that the CMS rule is aimed directly at insurers providing plans for the Medicare program. For those unfamiliar with that whole mess, Medicare insurance programs are offered to eligible beneficiaries not by state, but by zip code, meaning that there are well over 1,000 plans and options being offered across America. As a result of this, trends in the general health insurance market tend to follow the standards set by Medicare insurers, because they essentially glut the market (and, frankly, it’s just easier).

And this is the crux of this piece: can State Insurance Commissioners (and thus, state laws) use their influence and sway to essentially force insurance companies to count co-pay assistance cards toward deductibles/OPMs? The answer is a big, “…maybe?”

In most cases, federal law supersedes state law. In this case, that law is the Affordable Care Act (ACA, aka Obamacare). In order for states to engage in the health insurance marketplace (where consumers can buy individual plans), they have to live under ACA rules. As part of that, this new CMS rule would apply to the ACA, as well. That, however, is also unclear.

However, some states, such as Arizona, Illinois, Virginia, and West Virginia, have passed laws that prohibit insurers from using Co-Pay Accumulators in part, or in total. While Arizona and Virginia’s laws have a bit of wiggle room in their language, allowing for insurers to argue that they can use them in certain instances, both Illinois and West Virginia bar their utilization, outright, by not distinguishing between prescription drugs that do or do not have generic equivalents (Aimed Alliance, n.d.).

So, there’s not a lot of real light, here, to guide our way.

Advocates could attempt to get states to push through laws banning the practice (which, I think they should do, regardless of any advocacy), but let’s be honest – most state legislatures are out of session, for the remainder of 2020, and they’re almost all in the middle of an election year. There’s not going to be much movement on this issue until after November 4th.

The real question is whether or not federal rules supersede State Insurance Commission rules. If so, who the hell knows what’s going to happen, next?

References:

• Aimed Alliance. (n.d.) COPAY ACCUMULATORS – ENACTED LAWS. Washington, DC: Aimed Alliance. Retrieved from: https://aimedalliance.org/copay-accumulators-enacted-laws/
• Fox, A., Atkins, E., Trunk, S. (2020, May 29). HHS Clarifies Position on Copay Accumulators? Or Does It?. Sausalito, CA: JD Supra, LLC: Legal News. Retrieved from: https://www.jdsupra.com/legalnews/hhs-clarifies-position-on-copay-19750/
• Hanna, D. (2019, June 18). HHS Issues Final Regulation Of Drug Co-Pay Accumulator Programs:. Sausalito, CA: JD Supra, LLC: Legal News. Retrieved from: https://www.jdsupra.com/legalnews/hhs-issues-final-regulation-of-drug-co-93372/
• Schweitz, M.C. (2019, January). The Cost-Shift Conundrum of Copay Accumulator Programs. Thorofare, NJ: SLACK Incorporated: Healio: Healio Rheumatology: Practice Management. Retrieved from: https://www.healio.com/rheumatology/practice-management/news/print/healio-rheumatology/%7B04769e45-fca4-4ce6-90be-8f441d6afc7d%7D/the-cost-shift-conundrum-of-copay-accumulator-programs

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

Reflections from an HIV Advocate's Journey: Ken Pinkela

By: Ken Pinkela

I guess you can say I am an HIV advocate by necessity…

I left home 7 days after high school graduation in 1985 and reported to Basic Camp at Fort Knox, Kentucky. I had an amazing life and career. I have lived and been stationed around the world. From Europe to Hawaii to Asia and across the United States. I was diagnosed with HIV while deploying to Iraq in July 2006 – it was a total surprise. Everything changed at that moment.

I could no longer be assigned to a combat unit.I could no longer volunteer to deploy in support of any overseas operation. I could no longer be stationed in Korea, and I no longer had control over my HIV status. It was hard enough as it was to be told by a stranger, and be pulled away from your friends and at that time was going to get a detachment command, but it was the shear overwhelming nature of being treated “different…”

I headed back to Washington, DC and to what would be a very long tour at the Pentagon. But like so many other gay and HIV-positive service members…I had to try harder…work harder and deflect every question about why I was not able to deploy. I was even “coached” to lie and not let anyone know I was HIV-positive because of the fear and stigma in the chain of command.

I even went as far as to demand to be treated at the Navy Infectious Diseases Clinic in Bethesda, and not the Army Clinic at Walter Reed. I knew that I needed to be as far away from the Army, and I am a firm believer in mental health support that at the time only the Navy offered as a part of HIV care.

So if you’ve ever been in an HIV support group, there are the introductions and I’ve been HIV-positive for xx years...imagine these young service members because for them it was “days” since diagnosis, and the fear of disclosure to anyone of any rank. My parental advocacy kicked in. I would go to “group” in uniform. The clinic staff asked me not to do it (out of their own internal rank stigma/fear) but very soon realized why I was doing it. These young enlisted soldiers and sailors sitting amongst strangers, scared about life and their own military career. I’d be there, and in turn identify as Ken and HIV-positive...and at that moment I was just one of them. We were connected, and I found myself an accidental advocate and it felt right.

Sadly, my story turns very dark in 2009, when I was informed that I was under investigation for “HIV exposure” by a then “anonymous” complaint. It wasn’t until 2012 that I was court-martialed, and imprisoned at Fort Leavenworth without any evidence, denied the phylogenetic testing I volunteered for and even my family were called lairs by a US Army military judge. We later learned that a former U.S. Army First Lieutenant fabricated and lied that I had miraculously “exposed” him (not infected him) without any sexual contact. The Army never conducted an investigation and even denied my volunteering for phylogenetic analysis ,which would prove my HIV is not his HIV.

I was released from prison in 2013, and have been on a war footing ever since. I will not stop telling my story and advocating to abolish HIV criminalization. My fight continues even today! Yes, for myself and my family – as I lost everything…I lost my home, my career and a 29-year retirement. I can’t get a job due to the conviction, and only recently successfully won back my Veterans Affairs medical benefits from early Gulf War combat injuries that had me hospitalized for a year at Walter Reed.

It’s not an easy fight. I’ll admit that I cry every single day…its cathartic and helps clear my mind.

The struggle is real for all advocates and it’s also personal for many of us…it really is for me!

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

Reflections from an HIV Advocate's Journey: Lynea Hogan

By: Lynea Hogan

My HIV advocacy journey has been a trail of learning and growing experiences that shaped me to become who I am today; a vibrant fulfilled and alive woman living with HIV. I could not imagine that I would ever be able to say that when I was diagnosed in 1998. Pregnant with my son and unsure of both of our futures I felt alone, swallowed up in darkness and incredible despair. I was one of the lucky ones diagnosed after antiretrovirals hit the market, but my emotional and mental health was what was failing me.

It took 15 years of battling with my diagnosis alone before I took the advice of mental health professionals and attended my first HIV Support Group. I left those meetings invigorated and inspired to dig deep and give of myself completely. My life was forever changed because of it, I gained an entire community of fierce warriors including mentors that guided me into advocacy and community outreach. I also joined the Consumer Advisory Committee in my area of Eastern Virginia and many other community boards dedicated to education, prevention, and the well-being of People living with HIV and AIDS. I am a member of the Positive Women’s Network. I became a Greater Hampton Roads Planning Council member and dived into the Quality management side of HIV care by representing the consumer voice on the Clinical Quality Management Committee of the Virginia Department of Health. I completed certified Peer educator training and volunteered in a rural clinic. Every year I speak with Nursing students and Doctors about the patient perspective, living with HIV. I was honored at the SisterLove Inc. 2020 leading women’s society and received awards of recognition of service within my state.

I have been invited to attend many National conferences on HIV including the Ryan White Conference on HIV, HealthHIV SYNChronicity, ADAP Advocacy Association's 2018 Conference, as well as their 2019 ADAP Fireside chat in Richmond, which was an intimate gathering of stakeholders focused on issues affecting PLWHA in the state of Virginia (i.e., access to care and Ryan White services). I’ve gained so much knowledge from these experiences, they’ve laid the groundwork for a retreat I’ve organized with colleagues to support, inform, and provided fellowship for people living with HIV in the State of Virginia, scheduled for later this year.

The goal in advocacy is to meet people along your journey, learn from them, build networks, and bring others along to complete the mission. I am thankful to the mentors that saw something in me that I did not see in myself and I am grateful they convinced me that it was worth investing in that tiny light that shill shone inside of me. I hope that as I grow and expand upon this work that I have that kind of impact on someone else. Too often we get caught up in our own lives that we do not stop to see that others are carrying the same load but if we work together, we can get so much further.

There is still so much left to do. I find myself thinking about future generations and how important It is that those that come after us are left with a roadmap to where we want to go, not follow our journey but get to the destination. That place is one of love, kindness, justice, and no HIV. I believe it can happen because so many of us are doing the work right now. I want this for my beautiful son who is now a young man HIV negative because of the medications that came in time to save his life. I do this for him.

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

Reflections from an HIV Advocate's Journey: Jennifer Vaughan

By: Jennifer Vaughan

Laying on my couch, shrouded in illness, shock and shame, I somehow knew very early on that I would be educating people about what happened to me. It was February 2016 and I had just been diagnosed with HIV and AIDS. I've always been an open book, so that glimpse into the future felt realistic, but never could I have imagined where my advocacy would take me.

With the blessings from my family and boyfriend (at the time), now husband, I shared my story through social media. Many people living with HIV would love nothing more than to share their status and story with the world to educate and help others, unfortunately we live in a world where HIV stigma is so profound that HIV+ individuals are forced into silence. It's never lost on me how privileged I am to speak freely about it.

I started with Facebook and quickly transitioned to YouTube bringing an overall larger audience to my story. In turn, I was bombarded with questions from all over the world and therein my advocacy journey began.  It was gratifying to answer questions knowing I was making a difference.

I realized quickly that putting myself "out there" meant taking the good with the bad. The joy of connecting with another poz person, knowing you've somehow given them a bit of renewed strength by being public is motivating to say the least. Even better at times, is knowing you've educated someone who was open to information they otherwise never knew. For example, I've had people reach out to me concerned about an HIV+ family member being near their children. I'm able to take these opportunities and shed light about HIV myths on a personal level that can actually make a difference. Not surprisingly though, the stigma that oppresses most living with HIV is no stranger to advocates. Sometimes the louder we are, the louder the uneducated and fearful roar back. It comes with the territory, as does growing a very thick skin.

My advocacy has granted me trips to AIDS2018 in Amsterdam, two USCAs, several podcast interviews and magazine articles about my story. In 2018, I had the utmost honor as Keynote Speaker at ADAP's Advocacy Association's Annual Conference in Washington D.C.and was recently asked to join their Board of Directors, a position I now covet. Dreams you never knew you had really do come true.

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

Reflections from an HIV Advocate's Journey: Michelle Anderson

By: Michelle Anderson

In the 80's, I remember watching the news finding out that stars like Rock Hudson, Liberace and tennis great, Arthur Ashe had died from AIDS, a shameful disease brought on by reckless behavior. In my mind,  I felt they deserved what they had because of their sexual habits. Little did I know in a few years I would be met with the same diagnosis.

In April 1999, while in rehab, I had been told that I was HIV-positive. I thought that I was going to die, and that no one would ever love me again. I was riddled with shame and fear. After finding out, I shared my diagnosis with my mother who told me, "If you hadn't been doing what you were doing, you wouldn't have what you got!" She hung up the phone on me. I cried a cry so deep, I felt as though my soul was leaving my body. I believed her, and I believed that I, too, deserved my diagnosis. I was met with more HIV-related stigma a few days later while in rehab. I told myself to never tell anyone else again. I lived in silence, pain and relapses for many years. And in 2006, I said no more.

I found myself at a crossroad in March 2006. I decided it was time to leave the life I had led because it was literally killing me. I did not want to be that 'Jane Doe' found on the streets of Las Vegas, nor did I want to be remembered for doing selling dope, getting high and dying a horrible death. My children did not deserve that, my grandchild didn't deserve it, hell neither did I. So, I moved back to Texas, and started to regain my life back. I made amends to the people I had harmed, and started the process of redefining my legacy.

Housing was a number one priority for me. I was able to receive housing through a program designed for people living with HIV. Once I moved in, I was able to catch the break that I needed. I set goals for myself, and I achieved them. I began to embrace all the good things that was happening in my life. I felt proud of my accomplishments. But deep down inside living in housing with other people living with HIV was shameful. I did not want people to know where I stayed. Because if they found out, then they would find out about me, and I promised that I would never allow anyone to shame me again.

I managed to forge some friendships during my time at the housing program. I listened to stories of how people received their diagnosis. My heart began to soften, and my thoughts began to change. It was during my stay, I realized that I was terribly wrong for ever thinking that people in some way deserved an HIV diagnosis. I learned that loving someone was possible regardless of their HIV status. I met a woman who told me, "You have done nothing wrong to become positive." Little did I know my journey would shift and I would become an HIV advocate.

The early years of my HIV advocacy allowed me to share my story, and to use my life to help create, shift and change policy for the betterment of people living AND thriving with HIV. I gained strength in sharing my story because it was something I had to do to save my own life. I was sick and tired of how I was being treated because of my diagnosis. I joined Campaign to End AIDS, and became an activist. I used my voice to help create what the National AIDS Strategy should look like for a Black woman living with HIV. After being appointed to serve on the ADAP Advocacy Association's board of directors, I fought along with other fellow advocates to end waiting lists under the AIDS Drug Assistance Programs. I also joined a caravan across the U.S. to attend the last Presidential debate between Senator McCain and then Senator Barack Obama. In front of TV cameras, and hundreds of people, I stood up on a chair and yelled out for the first time since 1999, that I was HIV positive and I mattered! From that point on I was no longer silent.

I gained power that day, which led me to wanting to do more because for the first time, I was able to say out loud, "I am HIV positive." I had to do something, and my advocacy also needed to move from just being a part of a group of folk who were like me. I needed to talk with other women who did not identify with their own risks. I was able to do so by infuriating a pageant system. Never thinking that I would win, I wanted to share my experiences in hopes of changing the lives of other women and their idea around HIV transmission. And in 2011, I  made history by becoming Ms. Plus America, the first only known Black HIV positive woman to run in mainstream pageantry and win a national pageant title.

Holy Shit!!! I done told everybody. There ain't no going back now! For the first time ever, I felt I was reaching my goal of leaving a legacy for my children and grandchildren to be proud of. Though I no longer share my story story the way I have historically done so. I  use my experiences centered in the reproductive justice framework to address  race, class and gender to fight against systemic oppression that leads to many issues in the Black community such as poverty, lack of healthcare and access to resources to maintain quality of life that can lead to an HIV diagnosis.

I am still here 21 years later.... Living, surviving and thriving unapologetically with HIV!

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

Reflections from an HIV Advocate's Journey: Jen Laws

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

There’s a long way to go from being 19 at Covenant House in north Philadelphia to being 34 and a public health policy consultant going back and forth between New Orleans and South Florida.

That 15 year path includes a great deal of good luck, a persistent outlook of good will, and a commitment to patient centered systemic change.

“You’ve got a brain like a computer and I intend to use it,” – Joey Wynn.

Having dabbled in fundraising and being deeply involved in a sex-positive community building culture, I was gifted with a chance to subcontract about a decade ago. Over a few months I expanded my knowledge of payment systems, in particular those changing due to the then recently passed Patient Protection and Affordable Care Act. It was a stroke of luck, opportunity meeting preparedness, that became my basis of knowledge and involvement on policy matters affecting people living with HIV and, in particular, transgender people. Soon after, joining South Florida AIDS Network and becoming half of a dynamic duo, Mr. Wynn saw an opportunity in me he regularly seeks out and fosters – the “next generation” of advocate.

You should know, he bit off more than he could chew.

“I’m gonna need you to watch your language,” – Brandon M. Macsata.

Six years later, deeply immersed in advocating for systemic changes in Florida and regularly offering commentary on legislative and regulatory policy changes aimed at demystifying the process for community members and reminding policy influencers of the need to focus on patient experiences, I had the distinct pleasure of being invited to join the board of directors for ADAP Advocacy Association. I’ve gained a reputation for being frank and sometimes profane in urging funders and influencers to remember the human nature of where HIV thrives and the programming needs to ensure patients thrive. “We’re never going to end any epidemic if we keep sanitizing our programming, our language, and ignoring or avoiding sex.” This is true even for ADAPs. Effective outreach and education of available assistance programs must also speak to the holistic experiences of patients.

“Promoting Access to Care Among Transgender Men and Women Living with HIV/AIDS” became the first major project I got to work on for the ADAP Advocacy Association. Teaming up with RAD Remedy, the white paper, infographic, and Twitter chat aimed to shift the conversation around treatment priorities for transgender people living with HIV. The project is something I’m still deeply proud of and have used in advocating for systemic change. Along with informing the Human rights Watch project “Living at Risk: Transgender Women, HIV, and Human Rights in South Florida”, Florida’s ADAP program recently added certain hormone replacement therapies to their formulary, recognizing that an effective program doesn’t seek to prioritize care for a patient, but empowers a patient to prioritize their own care – reducing barriers and increasing access.

“I’m glad you exist,” – Tiffany Stringer

Systems change begins with humanizing the very real experiences of frustration and sometimes impossible barriers people living with HIV face in seeking the care we need to survive. PLWH are more than our lab work but we rarely acknowledge that in policy success metrics. Essential to patient driven changes is an oft forgotten notion of empathy; not the concerted sigh and nod but the willingness to take a chance – a risk of investment.

I still find myself in awe anyone cares much what I think much less seeks out my opinion on matters. And yet, at state meetings and in planning, I get a great deal of “what do you think?” I like to think it’s because I’m stubborn and bold. There’s no harm in asking and if I get told “no”, I’m back in the same spot I was before asking. Pointing out needs to planning bodies in states with bans on syringe funding as we approach the age of injectables, the logistical needs for staffing, opportunities to extend education via lab hours (hopefully solving both needs in “one swoop”), and informing policy positions and goals by leveraging existing payment systems – all of this work is my passion because it serves as a reminder “the boat rises from the bottom”. Until those with the least means, the most affected, are safe and happy and healthy, all of us face the risk of losing. Our systems cannot be devoid of the humanity they seek to affect.

As much as my colleagues hound me about pursuing an advanced degree, I’ve refused. In a nation with a seemingly impossible student loan crisis on the horizon, why would I seek additional debt? Every ounce of payment systems education I have, from 340B to ADAPs to ACA implications and implementation, is self-taught; webinars, fact sheets, diligent reading and memorization of statute, ruling, and regulation, case studies, pilot projects, endless listening to committees. I’m a voracious reader with a talent to translate lawyered language and legalese into plain, digestible, applicable language – a necessary tool for community engagement and education. I stand on this position as a matter of principle as well as the well-studied fact most people learn the necessary skills for their employment on the job. In an environment of advocacy, where a need for diversity of thought matters, it is an issue of principle to demand that if an employer or potential contract wishes for me (or anyone) to have an advanced degree, they include that as part of the offered compensation. We’re never going to break the molds laid before us and reach our goals by training out different approaches to problem solving. Additionally, integration of lived experience and work experience matters in patient advocacy and in much of non-medical service provision. I will absolutely die on the hill that demands our funders and our advocacy and service organizations hire from affected community and stop demanding an unreasonable and unnecessary institutional educational background. Employment and housing are the core issues PLWH face as barriers to care. So take this recount of my history as a reminder, should you be a funder or in a position of hiring for an organization, that your greatest opportunity to take a risk and “win” is all around you.

As the US has plateaued in declining HIV transmission rates, as our own federal government has given a weak nod at “Ending the HIV Epidemic”, I’d like to take a moment for the agencies, funders, and influencers reading this:

Take risks. Read the room, if you will. Today’s environment, in the age of COVID, our work hasn’t stopped; to the contrary, it’s more important now than ever. But our organizations are also struggling now more than they have in years. As we face a mounting jobless and eviction crisis, our community and industry’s historical positions will be exacerbated.

So leap. Take a big jump and hire someone interesting you wouldn’t traditionally hire. Fund the idea or agency who submitted a rushed grant proposal. Find and fund contractors who have left aging agencies due to their refusal to adapt and modernize.

******************************************

I wanted to include some background as to how this profile came about and what I find important in my work.

Brandon tells me I’ve provided leadership on trans issues and advocated for meaningful, systemic changes in access to care, providing program and policy insights and analysis. He’s been asking me to write this profile 3 months. Never one to decline a writing opportunity, I had to ask myself why I avoided this one.

There’s likely a whole post-doctoral class to be written on trans guys who maintain cultural standards of survival cisgender women are acculturated to, from doubting the impact of one’s work to prefacing expertise with “I think”. And while there’s some of that mixed up in my hesitancy to talk about myself, there’s more and I think…know it’s important to share with the advocates reading this.

You matter more than you know. Your humility and reminder to remain empathetic and ethical is critical to ensuring PLWH drive our own determination. Your story matters and you need to make sure someone else isn’t telling it for you. You get to talk about the “by chance” moments without viewing your work as “less than”. We all got here by a series of chances – some great, some not so great – and a great deal of hard work. Touting your successes is something you’ve earned. And not sharing them isn’t an issue of humility. It’s doubting your value because in this world, if we struggle, we are taught to doubt the earned nature of our successes and fear the rug being pulled out from underneath us should be “brag too much.”

You don’t have to do that. You deserve and have earned your success. Brag a little.

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

Reflections from an HIV Advocate's Journey: Warren Alexander O'Meara-Dates

By: Warren Alexander O'Meara-Dates

“I have no regrets. I wouldn’t have lived my life the way I did if I was going to worry about what people were going to say.” – Ingrid Bergman

Advocacy at its core is something many of us do without realizing we’ve ever done it. Advocacy is the public support for or recommendation of a cause or policy. Looking back over my 44 years, it is crystal clear to me that advocacy is the thing I was ‘born to do!’

I recall in my youth being an introvert never stood in the way of me speaking up and out on matters I saw as a detriment to me, my friends, or peers. These situations were not exclusive to school, my neighborhood, or my church of choice. I revolted from my childhood church home, for example, because they didn’t offer summer mission trips, Wednesday night activities for youth, or Sunday afternoon socials after “bible study.” Until that happened, I joined the neighborhood church because my classmate’s church home was ‘catering to the needs of their youth.’

Fast-forward to college matriculation and I ran for SGA President my senior year because ‘Student Life’ on campus didn’t offer us activities without the administration saying it was “okay.” For me there was a lack of school spirit, so I thought; let me advocate for some “non-traditional” things that the “church-affiliated” college isn’t used to doing. Yes; I received push back, but once elected me, my cabinet, and the campus resident students united for a planned walk-out to which administration responded with a budget and allowed us the opportunity to plan our activities and this sparked growth in campus infrastructure growing for the first time in almost 20 years.

Today, I find myself advocating for people like me living and thriving with HIV. The day of my diagnosis to some was a grim one; for me, however, getting that HIV and AIDS diagnosis was confirmation of my ministerial calling I had to fulfill. I had wandered through a “wilderness period” of not understanding life choices, career changes, spiritual questions, and failed relationships. November 2, 2009 the fog became clear. It was my “rebirth” and profound understanding that I was ‘born to make a difference for tomorrows world, TODAY.’

From the bed others said I’d never leave unless dead, I founded The 6:52 Project Foundation, Inc. It was to be and has become an affirming HIV Education, Scholarship, Advocacy, and LGBTQ Inclusion organization. Through my work daily I speak up for those who feel they don’t have a voice on healthcare policy, organizational inclusion of community member voices, and lived-experiences. I live to raise up those, like me earlier in life, who felt they didn’t belong, yet what is offered up is not the option. Being that voice, face, leader has humbled me enough to understand that no man or woman is indeed an island unto themselves. Someone somewhere is counting on us to speak up and speak out, because giving up is never an option!

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.