Thursday, June 25, 2020

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.

Jennifer Vaughan

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.

Jennifer Vaughan

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.

Thursday, June 18, 2020

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.

Michelle Anderson

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.

Michelle Anderson

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.

Michelle Anderson

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.

Thursday, June 11, 2020

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.

Jen Laws

“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.

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

Jen Laws

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.

Thursday, June 4, 2020

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!’

Warren Alexander O'Meara-Dates

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.’

Warren Alexander O'Meara-Dates

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.

Thursday, May 28, 2020

Missouri Governor Issues Proclamation on HIV/AIDS

By: Sarah Hooper,  intern, ADAP Advocacy Association, and rising senior at East Carolina University

In a recent proclamation by Republican Missouri Governor Michael L. Parson, the month of April was designated HIV Awareness Month. He is the first governor to issue a proclamation acknowledging the national "Ending the HIV Epidemic: A Plan for America." The Missouri proclamation references testing (diagnosis), treatment and prevention.

The Ending the HIV Epidemic ("EHE") plan - announced in 2019 - was developed by agencies across the U.S. Department of Health and Human Services (Offices of Infectious Disease). EHE provided 57 geographic focus areas where HIV transmission occurs at a high rate, and Missouri is one of only seven entire states that is a jurisdiction of focus. The goal of the EHE is to reduce new HIV infections by 75% by 2025 and by at least 90% by 2030 by focusing on four pillars: prevention, diagnosis, treatment, and outbreak response by working with programs, resources and the infrastructure of HHS agencies and offices nationwide (Offices of Infectious Disease).

Nationally, HIV/AIDS Awareness Month is usually recognized in December, but Governor Parson chose to hold the month of recognition in April. Missouri has 447 annual HIV diagnoses as of 2018 and estimates 12,529 total people living with diagnosed HIV. However, only 87% have knowledge of their HIV status, leaving many more individuals who may be living with the virus and completely unaware (CDC).

When left undiagnosed, HIV positive individuals can transmit to others unknowingly and the virus may progress within their own bodies to the point of serious consequences. Governor Parson addresses diagnosis in his proclamation as one of the four pillars vital to addressing the HIV epidemic in America.

A resolution in support of the HIV Viral Load Suppression in Improving Health Outcomes and Reducing Transmission was adopted by many members of the National Lieutenant Governors Association ("NLGA") in March of 2019. State governors who sponsored the resolution included Wisconsin, Hawaii, Delaware, Missouri, Virgin Islands, Kansas and Vermont.

The sponsorship of Missouri’s Lt. Governor Mike Kehoe may have helped to push the Missouri Governor’s recent proclamation to light and stressed the importance of HIV awareness. The NLGA resolution reads, in part:

“Whereas, over 1.2 million people living in the United States are infected with HIV, and one in eight is unaware of the infection… Whereas, viral load suppression not only improves individual health, but it also reduces HIV transmission on a population level.” (2019, March)

By addressing the HIV epidemic on a state level and national level, progress will begin to accelerate in each state. Missouri’s Governor has set a great example to other states on how to begin addressing the HIV Epidemic and bring awareness to a virus that had such a “taboo” stigma surrounding it for many years. Many advocates believe this proclamation will save lives and help de-stigmatize HIV for those who still may hold certain negative views around the virus and those who are living with it.

Since 1981, more than 700,000 Americans have lost their battle to HIV (Offices of Infectious Diseases). While the numbers of infections and deaths have declined over the years with the increase of HIV education, the issue remains: those who may spread the virus without knowledge. I truly believe that both the Missouri and National plan to stop the spread of HIV and better educate the general public on the virus will help to destigmatize the disease and help lower the number of cases nationwide.

References:
  • Geographic Priorities. (2020, May 21). Retrieved from https://www.cdc.gov/endhiv/priorities.html?CDC_AA_refVal=https://www.cdc.gov/endhiv/data.html
  • Office of Infectious Disease. (2020, May 8). Overview. Retrieved from https://www.hiv.gov/federal-response/ending-the-hiv-epidemic/overview
  • Resolution In Support of HIV Viral Load Suppression in Improving Health Outcomes and Reducing Transmission. (2019, March). Retrieved from https://nlga.us/wp-content/uploads/Resolution-In-Support-of-HIV-Viral-Load-Suppression-in-Improving-Health-Outcomes-and-Reducing-Transmission-2.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.

Thursday, May 21, 2020

Medicaid Block Grant Funding and HIV

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

For three decades, Republicans at both the state and federal levels have been attempting to convert social services programs, such as Welfare and Medicaid, over to block grant funding systems. One example of this conversion is the Temporary Assistance for Needy Families (TANF) program, created in 1996 and implemented in 1997. More recently, Republicans have been seeking for much of the past two decades to do away with the existing open-ended funding model that supports our current Medicaid system, and replacing it with block grant funding. Since Donald Trump began occupying the White House, Republicans, for the first time in recent memory, had a real chance to begin overhauling programs they felt were flabby and inefficient money pits with the support of a Republican House, Senate, and Executive running full steam behind it.

Those who work in public health, as well as those who work in HIV advocacy and activism, immediately began a campaign against this effort to do away with current Medicaid funding, particularly after winning in 2010 with the Medicaid expansion portion of the Affordable Care Act (ACA). They predict epic funding cuts, a return to wait lists for HIV treatment, and rationing of care that will put a target on the backs of people living with HIV.

Medicaid
Photo Source: WBBJ-TV

The concept of block grant funding has been a popular one in Conservative circles for decades, stretching back to the Nixon Administration, for Republicans, and also with Conservative Democrats, prior to the point when the party’s support of the Civil Rights Act caused said Conservative Dems to flee for redder pastures. Block grant funding, they have argued and continue to argue, allows local jurisdictions (i.e. – states) more “flexibility” to best determine how funds are used, giving states the ability to “innovate” and “experiment” with new approaches to solving various problems in ways that are unique to their population demographics, geography, and local scarcity of resources.

Critics, on the other hand, argue that, in virtually every instance where block grant funding is used, the number of people who can be helped is restricted by the amount of the block grant. Moreover, they argue that block grant funding is not responsive, meaning that funding stays constant without being adjusted to account for exigent circumstances, such as recessions, depressions, natural disasters, health emergencies, local job markets, et cetera.

Essentially, block grant funding works like this:
  1. A legislative body determines the maximum amount of money that can be spent;
  2. The federal department where those grants are housed (e.g. – Housing and Urban Development; Health and Human Services; Health Resource Services Administration, et cetera) comes up with a list of regulations that attempt to define how those grant monies must be used, and on what things they cannot be used;
  3. That body then allocates those funds and distributes them to states in the form of block grant awards, the amount for which are determined using a formula based upon various objective measures, such as (but not limited to) total population, the percentage of residents earning incomes that fall into the various tax brackets based upon tax filing, the number of children living in families that fall into those tax brackets, the cost of living (a calculation that is, itself, woefully outdated and in need of an update), the federal and state minimum wage, median incomes, et cetera ad nauseam;
  4. States receive whatever grant award is decided, and then have relative carte blanche to spend the funds however they see fit, so long as they stay within the federal guidelines of appropriate usage. This includes setting various eligibility standards, annual benefit caps per recipient, lifetime limits on eligibility, and other ways to “save money” while still being able to say that they use the funds as intended by the grantor.
One great example of this type of funding model in action is the Temporary Assistance for Needy Families program.

TANF
Photo Source: cva.ks.gov

In 1996, Republicans in Congress succeeded in dismantling the Aid to Families with Dependent Children (AFDC) program created in 1935 by the Social Security Act, replacing it with the Temporary Assistance for Needy Families (TANF) – a block grant-funded program that has a maximum benefit of two consecutive years and a five-year lifetime limit for beneficiaries.

This setup, Republicans and Neoliberals argued, would serve to “motivate” recipients to get off of the government dole and pull themselves out of poverty. It was deemed a “Welfare-to-Work” model, in which recipients either had to find better paying jobs, or else. Doing so, they argue, will give recipients a sense of pride and accomplishment, and help further their upward social and economic mobility toward the attainment of the American Dream.

In practice, however, the TANF program has had a net negative result for the very reasons opponents of block grant funding warned:
  1. States are allotted a dollar amount that is not adjusted for inflation, meaning that the pot of money they’re given has less spending power, over time. The value of all state TANF grants in 2014 was 30% lower than when those amounts were first allotted in 1997 (Hahn & Coffey, 2017).
  2. State grants for TANF are fixed, meaning that they do not increase (or decreased) based upon changing levels of need. This means that, for each increase in the number of residents who qualify for TANF dollars, the amount available for each recipient decreases (Hahn). 
  3. State grants for TANF also lock in inequality in state funding, because those grant award amounts were determined based upon pre-TANF state spending on welfare-related activities prior to TANF being enacted (Hahn & Coffey). This means that states that spent a lot of money on welfare per capita prior to reform received higher grant amounts, while states that spent the least amount of money were locked into receiving the lowest grant awards until such time as TANF is dismantled or grants are reconfigured.
So, how have states implemented the TANF program and utilized the block grants? The answer is, “Mostly poorly.”

The key feature of the TANF program, proponents argued, was that states could shift the funds freed up when families left welfare for work to childcare or other work supports, where need would increase.  States also could invest more in work programs to reflect the increased emphasis on welfare as temporary and work focused.

That is not what happened:
In TANF’s early years, when the economy was strong and cash assistance caseloads were shrinking, states used the flexibility of the block grant to take some of the funds that had gone as benefits to families and redirect them to child care and welfare-to-work programs to further welfare reform efforts.  But over time, states redirected a substantial portion of their state and federal TANF funds to other purposes, to fill state budget holes, and in some cases to substitute for existing state spending.  Even when need increased during the Great Recession, states were often unable to bring the funds back to core welfare reform services and instead made cuts in basic assistance, childcare, and work programs. (Schott, Pavetti, & Floyd, 2015).
At its outset, 70% of combined federal TANF and state Maintenance of Effort (MOE) funds went for basic assistance to poor families. By 2014, basic assistance represented only 26% of spending (Schott). Moreover, states are using a larger and growing share of TANF funds for “Other” state services by replacing existing state funds, thereby freeing up those existing state funds to be used for purposes unrelated to providing a safety net or job opportunities for TANF recipients (Schott).

With rare exception, the states that use more than 30% of TANF funds on Basic Assistance were Democrat-run (of 11 states in 2014, only Tennessee, Virginia, Alaska, Kentucky, and South Dakota were run by Conservatives). By comparison, the 10 states spending less than 10% on Basic Assistance were all run by Republicans (Schott).

This is largely indicative of a difference in ideological spending priorities between the parties, but is also reflective of attitudes toward assistance for the needy: for the most part, Republican-led legislatures prioritized “Other” spending priorities over providing Basic Assistance to needy families, while Democratic-led assemblies made that spending more of a priority.

After the Great Recession hit, in 2008, most states (both Democratic and Republican) cut state spending on childcare. These cuts reflected more restrictive policies about who could access childcare assistance, rather than being responsive to the need for childcare assistance (Schott).

What Schott and other researchers have found is that the so-called “flexibility” provided to states to address poverty-related spending priorities resulted in fewer innovative programs (such a Welfare-to-Work initiatives), and more spending in areas that did not result in direct assistance for needy families.

TANF is a great predictor of what is likely to occur should the Medicaid program be converted to a block grant-funded model. In practice, what has occurred is that the poorest people still end up receiving less, because TANF is not responsive to real world conditions.

When Republicans once again trotted out the idea of switching Medicaid to a block grant-funded program, public health experts and chronic illness advocates cried out in near unison, “THIS IS A TERRIBLE IDEA!!!”

So unpopular is the term “block grant,” that the Trump Administration rolled out a new and improved rebranding in 2020, calling it the “Healthy Adult Opportunity” program.

See? It’s not a “block grant,” anymore. It’s an “opportunity.”

If this sounds like the same justification used to push welfare reform, that’s because it is. The intent behind this movement is the same: to get as many people off of government assistance programs as possible, regardless of the method or the end results.

Medicaid
Photo Source: HIV Plus Magazine

Medicaid is the largest source of insurance coverage for people living with HIV, estimated to cover 42% of the adult population living with HIV, as opposed to just 13% of the overall adult population. Medicaid spending on HIV also accounts for 30% of total federal spending on HIV care, and is the second-largest source of public financing for HIV in the U.S. Moreover, Medicaid covers a variety of wraparound health services which are important for people living with HIV, including prescription drug coverage, inpatient and outpatient care, and preventive health services (Kaiser Family Foundation, 2019).

While the Healthy Adult Opportunities façade does allow exceptions for medications used to treat behavioral health (read: addiction) and HIV, the decision about whether or not states include those exceptions is left up to the individual states. Even if states do allow for exceptions for HIV, our experience with how the TANF program has been implemented, particularly in Conservative-run states, serves as an excellent omen of things to come:
  • the types of services covered will be cut;
  • states will increase eligibility requirements to make it more difficult to qualify for coverage;
  • enrollment numbers will be capped or frozen to prevent newly-diagnosed people from enrolling in state Medicaid programs, even if they’re eligible;
  • the number and types of drugs covered will decrease, meaning fewer available treatment options will be available for patients;
  • providers will face lower reimbursement levels
  • patients will be required to pay for a larger percentage of covered services. (Molozanov, 2020)
These aren’t theories; they’re based upon example of how various states have attempted to “save money” by reducing how much they spend after they’ve used up their allotted block grant funds. Just like with the TANF program, should states be allowed to “experiment” with Medicaid block grant funding, we will assuredly see similar attempts to “save money.”

The cost of treatment and healthcare is going to rise. With the pandemic outbreak of COVID-19 threatening to throw us into another Great Depression (because, let’s face it – we’re already in the beginning stages of another Great Recession), more people will be in need of coverage from state Medicaid programs as employers attempt to cut costs by furloughing or outright laying off employees, and thereby ending their employer-provided health insurance coverage. Were Medicaid currently funded using a block grant model, those people would be, for lack of a better word, “screwed,” as states would rush to tighten eligibility requirements, reduce the number of covered services, and everything in their power to cut spending on this “entitlement,” regardless of the skin color or political affiliation of eligible citizens.

Even with exceptions for HIV and certain other conditions, evidence has shown, time and again, that, when faced with tough times, states will opt to restrict access to social services programs, whether or not block grant funding is employed. At least with open-ended Medicaid funding, the funds won’t simply stop after a certain point; at least people won’t be faced with lifetime limits on whether or not they can even apply or be eligible.

References:
  • Hahn, H. & Coffey, A. (2017, February 05). What TANF can teach us about block granting social services. Washington, DC: Urban Institute: Urban Wire: Poverty, Vulnerability, and Safety Net. Retrieved from: https://www.urban.org/urban-wire/what-tanf-can-teach-us-about-block-granting-social-services
  • Kaiser Family Foundation. (2019, October 01). Medicaid and HIV. Washington, DC: Kaiser Family Foundation: HIV/AIDS: Medicaid and HIV. Retrieved from: https://www.kff.org/hivaids/fact-sheet/medicaid-and-hiv/
  • Malozonov, D. (2020, January 30). MEDICAID “BLOCK GRANTS” WOULD BE DEVASTATING TO PEOPLE LIVING WITH HIV AND HEPATITIS. Washington, DC: National Alliance of State and Territorial AIDS Directors: Blog. Retrieved from: https://www.nastad.org/blog/medicaid-block-grants-would-be-devastating-people-living-hiv-and-hepatitis
  • Schott, L., Pavetti, L., & Floyd, I. (2015, October 15). How States Use Federal and State Funds Under the TANF Block Grant. Washington, DC: Center on Budget and Policy Priorities: Research: Family Income Support. Retrieved from: https://www.cbpp.org/research/family-income-support/how-states-use-federal-and-state-funds-under-the-tanf-block-grant
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 14, 2020

Bad Medicine Prescribed by the Trump Administration, Putting Health Insurers before Patients

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

Earlier this week the Centers for Medicare & Medicaid Services ("CMS") issued the final Notice of Benefit and Payment Parameters for the 2021 benefit year, also referred to as the 2021 Payment Notice. CMS hailed the announcement as continuing "the Trump Administration's efforts to promote affordability, improve consumer choice, ensure program integrity, and increase market stability," yet it was met with strong criticism from the patient advocacy community. The ADAP Advocacy Association blasted the Trump Administration for putting the deep pockets of the health insurance industry before the needs of patients living with chronic health conditions, such as HIV/AIDS.

Money and Prescription Drugs
Photo Source: Patients Rising Now

Most troubling for patients is the decision allowing health insurance companies to disallow drug manufacturer co-pay assistance programs towards patient out-of-pocket cost sharing and deductibles.
Co-pay savings programs are offered by drugmakers, thereby reducing out-of-pocket costs for patients. Some programs, such as co-pay coupons are typically for "expensive, brand name drugs without a generic equivalent" (Chase, 2019).

According to a statement issued by Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, "In 2018, drug manufacturer copay assistance totaled $13 billion, according to data from IQVIA. The new rule is a complete reversal of the administration's policy announced last year that required copay assistance to count for brand name drugs that do not have a generic."

That sentiment was echoed by Bill Remak, chair of the International Association of Hepatitis Task Forces: "This is a major setback for patients living with viral hepatitis and related diseases and will effectively raise patient costs and reduce access to critical medications. On behalf of the millions of people living with viral hepatitis, we urge the Trump Administration to reverse this rule and not adopt policies that do not count copay assistance toward their deductible and annual out-of-pocket limit. With the COVID-19 pandemic, this move creates even more barriers preventing patients from getting the medications they need."

CANN Tweet

Twitter also was filled with condemnation from the patient advocacy community, including rebukes from the Community Access National Network (CANN) and The AIDS Institute.

The AIDS Institute Tweet

The PAN Foundation warned disallowing co-pay accumulator programs will hurt vulnerable patients by shifting the cost burden over to them.

According to Patients Rising Now ("PRN"), "patient assistance programs are providing free medications, expanding patient support services and increasing access to care as a way to help millions of patients struggling to pay the bills during the COVID-19 pandemic." PRN characterized the decision by CMS as flawed and asked that they reconsider the final rule.

The All Copays Count Coalition - representing a broad spectrum of patient groups - sent a letter to HHS Secretary Azar prior to the final rule urging HHS to reconsider the co-pay provision. It obviously fell on deaf ears because the Trump Administration sided with the greedy health insurers rather than the patients who need the financial assistance.

A copy of the 2020 Final Payment Notice can be downloaded online: https://www.cms.gov/newsroom/press-releases/cms-announces-final-payment-notice-2021-coverage-year.

References:
  • Chase, Lauren (2019, September 16). What Are Manufacturer Copay Cards? GoodRx. Retrieved online at https://www.goodrx.com/blog/what-are-manufacturer-copay-cards/. 
  • Centers for Medicare & Medicaid Services (2020, May 7). CMS Announces Final Payment Notice for 2021 Coverage Year. Retrieved online at https://www.cms.gov/newsroom/press-releases/cms-announces-final-payment-notice-2021-coverage-year.
  • Remak, Bill (2020, May 8). On May 7, 2020, the Centers for Medicare and Medicaid Services (CMS) released its final 2021 Notice of Benefit and Payment Parameters rule. LinkedIn. Retrieved online at https://www.linkedin.com/pulse/may-7-2020-centers-medicare-medicaid-services-cms-released-bill-remak/.
  • Schmid, Carl (2020, May 7). Trump Administration Shocks Patients By Allowing Insurers to Increase Cost of Prescription Drugs. HIV+Hepatitis Policy Institute.
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.