Friday, April 29, 2016

Restricted Access to Care under Insurance Network Narrowing

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

One community that the Affordable Care Act ("ACA") has served particularly well is people living with HIV/AIDS. The law has led to the elimination of pre-existing condition barriers, lifetime limits on the amounts insurers have to pay, and the prescription drug “donut hole” under Medicare Part D, to name only a few. Expanded screening for HIV-infection is also an important feature of the law. That said, new barriers now face many people living with HIV/AIDS trying to access care and treatment. Among the most troubling is insurance network narrowing.

The ADAP Advocacy Association hosted a roundtable discussion on the "Restricted Access to Care under Insurance Network Narrowing" in Birmingham, Alabama earlier this month. The practice of narrowing networks is a cost-savings tool utilized by insurers, but patients find fewer doctors and hospitals in their network...or pay more to use a provider of choice. The practice has taken on a life of its own under the ACA.[1]

Funnel with the words, "Narrowing Provider Networks," going down it.
Photo Source: California Broker

The issue isn't going away, which is prompting advocates to combat it. The forum in Birmingham included an in-depth policy discussion on insurance network narrowing with the following panelists:

  • David Poole, Legislative Affairs, AIDS Healthcare Foundation
  • Wendi Clifton, President, WL Clifton Political Consulting
  • John Dunnam, Positive Leadership Council, AIDS Alabama
  • William Arnold, President & CEO, Community Access National Network
Panelists discussing insurance network narrowing.
L-R: B. Arnold, J. Dunnam, W. Clifton, and D. Poole
One consistent theme emerging is consumer choice -- including among people living with HIV/AIDS -- is indeed "narrowing." In Georgia, numerous changes to the marketplace plans have resulted in no Platinum Plans being offered...and costs are increasingly being shifted to the patient. One problem for patients, such cost-containment tactics yield a "push-pull" paradigm with rising drug costs versus insurance carriers mitigating risk. The end result is the same, and that is both contribute to access to care and treatment barriers.

For example, Grady Health System in Georgia provides over $200 million in indigent care because over half the population experience insurance-related barriers. This figure is problematic for people living with HIV/AIDS considering that the Peach State is one of the leading states in new HIV infections.

Patients in Florida are experiencing similar challenges, too. Summarized David Poole, Director of Legislative Affairs for AIDS Healthcare Foundation, "Narrow networks are forcing Floridians to access providers who they do not know, do not have an existing trusting relationship and often times are not experienced as HIV providers. The treatments have become highly effective and are much more simple regimens but the disease state remains very complex."

The problem with insurance network narrowing is compounded by the "balance billing" practice by insurers. characterizes balance billing as, "When a provider bills you for the difference between the provider’s charge and the allowed amount."[2]

(Editor's Note: Additional barriers to care and treatment were outlined in our previous blog, "Future of ADAP in Medicaid Non-Expansion States")

As the ACA continues to unfold, growing pains will certainly remain and none probably more frustrating than insurance network narrowing. People living with HIV/AIDS -- just like any patient -- should be afforded the opportunity to visit the provider of their choice, especially for specialty services such as infectious disease care and treatment.

The ADAP Regional Summit in Birmingham, Alabama was held in partnership with the AIDS Alabama, AIDS Healthcare Foundation (AHF) and the Community Access National Network (CANN). To learn more, visit

[1] Ableson, Reed, The New York Times, "More Insured, but the Choices Are Narrowing,"May 12, 2014; last viewed online at 
[2], "Balance Billing," 

Wednesday, April 20, 2016

Future of ADAP in Medicaid Non-Expansion States

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

On April 15th, access to care and treatment took center stage in Birmingham, Alabama as the ADAP Advocacy Association hosted a roundtable discussion on the "Future of ADAP in Medicaid Non-Expansion States." It is an issue with deep rooted concerns among people living with HIV/AIDS, especially since the Affordable Care Act ("ACA") was designed to expand both. According to Families USA, there are currently 19 non-expansion states...mostly situated in the South, and rural states in other parts of the country.

Map of the United States showing the states with Medicaid expansion versus non-expansion.
Photo Source: Families USA

One of the most troubling unintended consequences of the ACA has been exacerbated health disparities in the South, evidenced by only three southern states having expanded their Medicaid programs (Arkansas, Louisiana, and West Virginia).  Yet the South is arguably the area of the country that needs greater access to care and treatment, and not less.

The forum included perspectives from Alabama, and Florida -- both Medicaid non-expansion states. At issue was navigating how to advocate around the new ACA-led healthcare world increasingly driven by an insurance model, rather than a service-delivery model. For example, new barriers have emerged preventing some people living with HIV/AIDS from obtaining medications that may have been previously more accessible to them.

Aside from Alabama and Florida, other non-expansion states represented at the forum included Georgia, North Carolina, and Tennessee. The forum included an in-depth policy discussion with the following panelists:

  • Joey Wynn, Community Relations Director, EmpowerU
  • Michael J. Mugavero, MD, MHSc, Professor of Medicine, University of Alabama at Birmingham
  • Alex Smith, Director of Policy and Advocacy, AIDS Alabama
  • Warren Dates, Sr. Peer Linkage Specialist, Alabama Department of Public Health

Panelists discussing Medicaid.
L-R: A. Smith, Dr. M. Mugavero, W. Dates, and J. Wynn
Florida has learned to leverage its existing programmatic structure and wrap-around services under Ryan White to minimize clients falling through the cracks. In many cases, clients have experienced fewer barriers to care and treatment by receiving their medications via the AIDS Drug Assistance Programs (ADAPs), as compared to what is unfolding in some Medicaid expansion states. Florida could very well be the exception, though.

In Alabama -- where Blue Cross Blue Shield yields a monopoly on the state's insurance market -- efforts continue to focus on prioritizing services for people living with HIV/AIDS. On a positive note, ADAP waiting lists have been completed eliminated and client advocacy has become more specialized by focusing on related issues (i.e., housing and transportation).

In addition, Alabama’s Insurance Assistance Program (AIAP) was launched in 2015, providing cost- effective health insurance to eligible clients. This approach to linking clients to timely, appropriate care and treatment is paying dividends with outcomes, too. According to the State of Alabama AIDS Drug Assistance Program (ADAP) Quarterly Report, "The majority of clients actively served by ADAP reported viral suppression (i.e., viral load ≤ 200 copies/mL) at the last viral load test collected during the preceding 12 months. However, the level of viral suppression varied by service category with MEDCAP reporting the most virally suppressed clients (89 percent), followed by AIAP (79 percent) and ADAP (56 percent). As only fifty-six percent of active ADAP clients are virally suppressed, this indicates a need for improved adherence to antiretroviral therapy (ART) and retention in care in this service category."[1]

Ironically, Alabama and Florida are experiencing different challenges related to the marketplace plans. In Alabama, there are not enough plans available to people living with HIV/AIDS (only 12), whereas in Florida too much time is spent "policing" the plans because there are so many.

The discussion also provided an opportunity to share lessons learned, and the implementation of successful strategies aimed at increasing access to care. Among them, local agencies leveraging 340B rebates to expand services and supports in critical areas, and the deployment of telemedicine networks.

Medicaid expansion will undoubtably remain an issue with profound repercussions on people living with HIV/AIDS, especially considering the uneven way it happening across the country. In the meantime, partnerships between care providers will grow in importance, as well as leveraging existing dollars to promote better health outcomes.

The ADAP Regional Summit in Birmingham, Alabama was held in partnership with the AIDS Alabama, AIDS Healthcare Foundation (AHF) and the Community Access National Network (CANN). To learn more, visit


[1] Alabama Department of Public Health, Division of HIV Prevention and Care, "State of Alabama AIDS Drug Assistance Program (ADAP) Quarterly Report," March 31, 2016; last viewed online at 

Thursday, April 7, 2016

ADAP Directory & ADAP Formulary Database Link Stakeholders to Important Tools

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

On March 15th (2016), an important resource was once again made available by the National Alliance of State & Territorial AIDS Directors (NASTAD). NASTAD released its 2016 Online AIDS Drug Assistance Program (ADAP) Formulary Database and accompanying User’s Guide. The Database complements the patient-centric ADAP Directory, which is the ADAP Advocacy Association's flagship program.

NASTAD describes the provider-focused Database as "an online, searchable, publicly available resource detailing state-by-state ADAP coverage of medications both individually and by drug class including HIV antiretroviral (ARV) treatments, “A1” Opportunistic Infections (A1 OI) medications, treatments for hepatitis B and C, mental health and substance use treatment medications, and various vaccines and laboratory tests."[1]

Key findings from the 2016 ADAP Formulary Database include:[2]
  • 3 ADAPs have “open formularies” in which all FDA-approved medications are included, excluding designated exceptions
  • 38 ADAPs cover one or more hepatitis B treatment medication
  • 33 ADAPs cover one or more hepatitis C treatment medication
  • 19 ADAPs cover one or more of the curative direct acting antiviral (DAA) hepatitis C (HCV) treatment medications
  • 9 cover daclatasvir (Daklinza)
  • 17 cover dasabuvir, ombitasvir/paritaprevir/ritonavir (Viekira Pak)
  • 19 cover ledipasvir and sofosbuvir (Harvoni)
  • 8 cover ombitasvir, paritaprevir and ritonavir (Technivie)
  • 12 cover simeprevir (Olysio)
  • 17 cover sofosbuvir (Sovaldi)
  • 43 ADAPs cover one or more of the most frequently prescribed mental health treatment medications
  • 14 ADAPs cover one or more substance use treatment medication 
The ADAP Directory – launched in 2014 with ongoing support from AbbVie, Gilead Sciences, Janssen Therapeutics, Merck, ViiV Healthcare, and Walgreens – ensures that people living with HIV-infection have access to the information and resources they need to live healthy and productive lives. The ADAP Directory consolidates useful ADAP-related information from all 50 states and 6 territories into one convenient location for:

  • easy access to ADAP resources organized by state and territory;
  • updated, current information for all 56 state ADAPs -- including drug formularies; and
  • uniform presentation of ADAP information for effective advocacy and easy dissemination.
The “Perfect Storm” that had ravaged the cash-strapped ADAPs between 2008-2010 exposed some very real deficiencies in the amount and quality of information made readily available to patients living with HIV/AIDS. Today, patients...and in fact, all community stakeholders...have much more user-friendly information at their disposal.

Aside from the interactive map, which allows users to navigate all 56 ADAPs, other important resources and tools are available at the ADAP Directory. Among them, patient medication assistance programs and pharmaceutical patient assistance programs.

Chart displaying various patient assistance programs.

Chart displaying pharmaceutical patient assistance programs.

To learn more about the ADAP Directory, visit To learn more about the NASTAD Formulary Database, visit
[1] National Alliance of State & Territorial AIDS Directors (NASTAD), "Update: 2016 ADAP Formulary Database," March 16, 2016.
[2] National Alliance of State & Territorial AIDS Directors (NASTAD), "Update: 2016 ADAP Formulary Database," March 16, 2016.

Thursday, March 31, 2016

Hepatitis on the Hill

By: Emily Stets, Program and Policy Associate, National Viral Hepatitis Roundtable (NVHR)

Imagine a room filled with over a hundred people from around the country, all wearing name badges, mingling in small groups and with purple folders tucked under their arms. Purple shoulder bags emblazoned with Hepatitis on the Hill are scattered around the room, straps hanging off the backs of chairs, and many participants have donned little Hepatitis on the Hill pins on their lapels.

This type of event may not seem uncommon in HIV advocacy, where inspiring events like AIDSWatch constitute the nation’s largest constituent-based national HIV/AIDS advocacy event. However, such events have only just begun to take off for the viral hepatitis community, where the urgent need for national stakeholders to address the viral hepatitis pandemics has heightened in the past few years.

Hepatitis B and C are distinct blood-borne viruses transmitted through blood-to-blood contact. Left untreated, the viruses attack an individual’s liver, and represent the leading cause of liver cancer in the United States.[1] The CDC’s March 2016 Report to the Nation on the Status of Cancer indicated that while the rate of most cancers in the U.S. have declined, liver cancer has increased 2.3% between 2003 and 2012. The report notes hepatitis C as a major contributing factor to liver cancer, and cited that 25% of people with hepatitis B develop serious liver problems, including liver cancer.

For many reasons, there is an urgent need for the viral hepatitis movement to unite and bring advocates together on a national stage. Alarmingly, recent data from the CDC has shown that deaths associated with hepatitis C surpassed deaths associated with all fifty-nine other notifiable infectious diseases combined.[2]

Rising Mortality Associated with HCV in the U.S.
Chart showing Hepatitis C infection rates rising, as other infectious disease rates declining.

The opioid and heroin epidemics are fueling the spread of new hepatitis B and C infections among people who inject drugs (PWID) across the country. Though many officials focused on HIV outbreak in Scott County, Indiana, a CDC report shows that 85% of PWID who contracted HIV were also coinfected with hepatitis C. Due to similar routes of transmission, studies show that about 25% of all people with HIV also have chronic hepatitis C, and 10% of people with HIV are living with hepatitis B.

Hepatitis B disproportionately affects the Asian American/Pacific Islander (AAPI) community.  While AAPIs make up less than 5% of the total U.S. population, they account for more than 50% of Americans living with chronic hepatitis B. We also continue to see perinatal transmission of hepatitis B despite having a safe and effective vaccine to prevent the disease. Community organizations struggle to address these vast disparities within the populations they serve with finite resources.

To address the necessity of uniting advocates, three national coalitions took action. This March, Hep B United (HBU), the Hepatitis Appropriations Partnership (HAP), and the National Viral Hepatitis Roundtable (NVHR) coordinated an event similar to AIDSWatch called Hepatitis on the Hill (HOTH). Over a two-day period, over one hundred constituents from twenty-seven states descended on Capitol Hill to educate their legislators on the impact of hepatitis B and C in their communities.

Throughout the event, advocates from across the nation engaged in conversation about the importance of screening, education, and treatment access, as well as the barriers they face in addressing these issues in their communities.

A key part of HOTH included networking, connecting advocates with resources, and framing constituents’ experience with viral hepatitis for legislators. In practicing their stories through role-play, participants prepared to ask their legislators to:
  1. Support increased funding for the Division of Viral Hepatitis at CDC in the FY 2017 LHHS Appropriations Bill.
  2. Urge legislators to maintain the modified syringe language included in the FY 2016 Appropriations Bill, which allows syringe service programs to use federal funds to support existing organizational efforts, though not to specifically purchase syringes.
Another highlight of the event was the participation of Dr. John Ward, the Director for the Division of Viral Hepatitis (DVH) at the CDC, and Dr. Rich Wolitski, the Acting Director from the Office of HIV/AIDS and Infectious Disease Policy (OHAIDP). Participants had the opportunity to engage in conversation with these officials, and a special forum allowed advocates the opportunity to provide Dr. Wolitski with input on the planned update of the HHS Viral Hepatitis Action Plan.

These parallel events in the viral hepatitis and HIV communities highlight the overlap between these movements that serve populations living with certain infectious diseases, particularly with HIV and hepatitis B and C. The rates of HIV, HBV, and HCV coinfection remind us that these movements are not separate from one another, but interconnected. At this stage of these pandemics, there is enormous potential for collaboration and resource-sharing to combat HIV and viral hepatitis.

We encourage you to join the fight and explore how HIV and viral hepatitis coinfection impacts the population you serve. There are many ways to connect with others working in hepatitis! Here are a few:

Want to become more involved in hepatitis and appropriations?

Visit the Hepatitis Appropriations Partnership’s (HAP) website to learn more!

Want to connect with other organizations working in viral hepatitis?

Join NVHR and follow us on Facebook and Twitter!

Want to be involved with hepatitis B?

Visit for more information, and follow HBU on Facebook and Twitter!

[1] Perz, J. F., Armstrong, G. L., Farrington, L. A., Hutin, Y. J., & Bell, B. P. (2006). The contributions of hepatitis B virus and hepatitis C virus infections to cirrhosis and primary liver cancer worldwide. Journal of hepatology, 45(4), 529-538.
[2] Ly, K. N., Hughes, E. M., Jiles, R. B., & Holmberg, S. D. (2016). Rising Mortality Associated with Hepatitis C Virus in the United States, 2003-2013.Clinical Infectious Diseases, ciw111.


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. 

Monday, March 21, 2016

Co-Paying the Piper

By: Marcus J. Hopkins, Blogger

One of the biggest changes for many lower income patients under the Affordable Care Act (ACA) has been the transition to paying co-pays for their medical care. For patients living with HIV, this has been exceptionally difficult in states whose Ryan White Part B programs – the AIDS Drugs Assistance Programs (ADAPs) – have opted to pay for their clients’ insurance premiums, rather than simply directly paying for services as they’re administered. What this means for patients is that, where they once never had to worry about doctors’ visits or paying for medications, depending on their state of residence, they may not be responsible for paying co-pays for services.

To the average American with a stable, if thinly stretched, income, this may not seem like a big deal; but, to those of us living with HIV/AIDS on fixed or fluctuating incomes, this distinction may create an additional barrier to care that may not have existed, prior to now. It can be difficult to explain to people how, when one’s income is already low, paying $20-$30 for a visit to the doctor requires foregoing other basic necessities such as food or a utility bill put off until later; paying $100 for your HIV medications every month can mean that you no longer have enough to afford rent.

People who live without a chronic disease often fail to see the hardships presented with treating that disease. Outside of simply the cost of treatment, there are additional social and emotional issues at play. Having to rely on government assistance for any reason is frequently derided in our nation as a weakness; a moral failing that renders the recipient incapable of taking care of themselves. As such, there is often a guttural sense of shame and humiliation that accompanies having to rely on these assistance programs. It is this component that is so often left out of the conversation.

More than just the psychosocial aspect of seeking assistance, the reality is that, when a patient discovered their HIV-positive status, they are often unaware of the options that exist, in the way of coverage. Now that people with pre-existing conditions can no longer be barred from insurance coverage, many simply assume that private insurance is the only option available to them. In states where Medicaid services have not been expanded to include coverage for people living with HIV, many patients are unaware of the existence of the Ryan White or ADAP programs that are in place to provide assistance for lower income patients who cannot afford the cost of treatment.

Even with these programs in place, their assistance does not meet the Federal requirement for insurance coverage, and clients whose incomes are higher than the maximum allowed for exemption from the penalty for not having private insurance are often left to foot that bill, as well. This is one of several reasons why many ADAP programs are switching their coverage over to paying for private insurance, rather than a direct payment model.

For lower-income patients still having trouble paying for treatment, even with insurance, Patient Assistance Programs (PAPs) exist that can help to partially or totally defray the costs. These programs are, however, largely unknown to people outside of the “know,” as it were – if you don’t “know” about them, you don’t know about them, and oftentimes, you only find out about them through random word of mouth. Sadly, many ADAP programs’ employees are unaware of these programs, and aren’t able to provide adequate information about either their existence or the requirements for applying.

One such program – the Patient Access Network (PAN) Foundation – has long served this purpose for people who are underinsured living with HIV. The maximum award level is $7,500 per year. Patients may apply for a second grant during their eligibility period subject to availability of funding.

Unfortunately, funds available through this program have been depleted. As of March 14th, 2016, patients seeking assistance for HIV are being encouraged to go to the Patient Advocate Foundation (PAF) for assistance. Individuals who have been recently approved for grants through the PAN Foundation will not be affected. When needing additional assistance or to re-enroll, individuals are encouraged to check back with PAN to determine if the fund has been re-opened and/or to seek additional support through PAF.

Patient Advocate Foundation

While the funds at PAN for HIV assistance have been exhausted for 2016, there are still funds available for patients who are mono- or co-infected with HCV at both PAN and PAF; one only needs to apply separately for assistance with that specific condition, as funds for HIV drugs do not carry over to HCV without an additional application.

Additionally, it should be made clear that these programs are not designed for the uninsured; rather, they are designed for the underinsured – those who carry some form of insurance, but for whom co-pays are unaffordable. It is also crucial to understand that these programs cover only the costs associated with drug co-pays; office visits and other non-pharmaceutical costs are not covered, and are left up to the individual and/or the Ryan White funds allocated to their clients.

For more information about PAF, and how it differs from the Patient Advocate Foundation, please visit

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, March 10, 2016

The 'Magic City' Embodies the Denver Principles

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

Birmingham is largest metropolitan city in Alabama, and its deep rooted history earned it the nickname, "The Magic City." Once a bustling manufacturing hub in the South, it is now recognized nationally for some of its leading medical research. Unfortunately, Alabama -- like most states in the Deep South -- has been disproportionately impacted by HIV/AIDS. Yet, thanks to organizations such as AIDS Alabama, there is a vibrant grassroots advocacy community fighting to raise awareness, advance linkages to care, and promote the ideals embodied in the "Denver Principles."

Photo Source:
The ADAP Advocacy Association (aaa+®) is committed to keeping the patient perspective at the center of its advocacy and educational activities, especially at the local level. After all, all HIV/AIDS organizations -- whether it is a advocacy organization, think tank, or service provider -- exist to promote greater patient health and wellness. Isn't that what the Denver Principles were all about, even as a movement that is still evolving?

(Editor's Note: Please read Larry Bryant's 2013 blog, Will The Denver Principles Ever Be Relevant To Black People Living With HIV & AIDS?)

To that end, aaa+® again this year will host regional summits designed to gather community input on the AIDS Drug Assistance Programs (ADAPs). Community input at the local level is essential to improving access to care and treatment for people living with HIV/AIDS as the Affordable Care Act (ACA) continues to be implemented across the nation. With some of the ongoing challenges facing people living with HIV/AIDS under the ACA, it is important for the advocacy community to share their insight and perspective.

There will be a regional summit held in Birmingham, Alabama on April 15th. It is being held in collaboration with AIDS Alabama, AIDS Healthcare Foundation (AHF) and the Community Access National Network (CANN). To learn more about the ADAP Regional Summit in Birmingham, or to register for this important community event, go to

Thursday, February 25, 2016

The Unaffordable No-Care Act: Why the ACA has outlived its usefulness

By: Sue Saltmarsh, Blogger

Despite the spin of the White House and most Democrats, when you look at the goals of the Patient Protection & Affordable Care Act (otherwise known as the Affordable Care Act, or ACA) compared to the realities people are facing every day, you will find that the ACA, or Obamacare as it’s called, has failed in all but a few of its original intentions. The reasons for this failure are many, but ignoring it on one side and squawking, “Repeal and replace!” on the other does nothing to address the truth. The ACA has failed because it wasn't enough; not brave enough to confront the greed of insurance companies, not visionary enough to change the way we approach healing in this country, and certainly not compassionate enough to actually help the people who needed it most. Bottom line – it “protects” profit, not people, and is only affordable for those who can already afford to pay.

President Obama signing the Affordable Care Act
Photo Source: The White House

There are five things the ACA has inarguably achieved:

The elimination of the onerous “pre-existing condition” clause
The end of lifetime caps on benefits
No more charging women more than men
Eliminating age-based discrimination
Enabling children to be included on their parents’ policy until age 26

It has also achieved:

The growth of insurance company profits
The decrease of access to care even among those who are insured
The increase of out-of-pocket costs
The increase of the number of people who are underinsured

The “why” of it
There are probably more reasons why we’ve come to this crisis in healthcare than any of us could know, but to me, it comes down to two things. First, then-Senator Obama made the mistake of leaving the authorship of healthcare policy to academics, think-tankers, and so-called economists with no input from the People or a variety of medical providers. I know this because the policy was already written when I accepted the invitation to serve on his campaign’s Healthcare Policy Committee thinking I could contribute to the creation of a single-payer system. Instead, it soon became clear that no input was welcome – our job was to sell what had already been written to the voting public.

Secondly, whether you approve of him or not, I believe that Barack Obama went into the “negotiations” of writing the legislation in a room filled with Republicans and healthcare industry hit men out for blood, when he na├»vely assumed that they were there in good faith, as he was. Instead, he had to settle for what he could get and he got no help from his own party or the voices of single-payer advocates, who weren’t even allowed in the room.

Couple that rocky start with the blatant obstructionism of racist Republicans and the ACA became a shell of what it was intended to be. The medical industrial complex got a pathway to more riches and the ability to justify mergers which are now creating monopolies the kind of which may bring Teddy Roosevelt back from the dead (not a bad idea for a new zombie-themed TV show!). And the People? We got royally screwed.

The true cost
Back in 2012, I went through the process of calculating the cost to me if my employer dropped our insurance and I was forced to go to the “marketplace” (doesn’t that sound quaintly friendly like you put on your gingham and sling your hand-woven basket over your arm and go to market?). As the insurance companies began to publish charts of what their plans would provide for what cost, there was nothing close to the $120 premium with a $500 deductible and, at that time, no co-insurance that I was paying with my employer-based Blue Cross Blue Shield insurance. OK, so what about a subsidy? My income was low enough to qualify for one, but as it turned out the $230-some I would get wouldn’t even put a dent in the $675 premium and $1500 deductible, higher co-pays, and co-insurance that left me holding the bag for 20% of everything. I resolved right then and there not to ever buy that kind of raw deal. And just let them try to pry that punitive fee for not having insurance out of my cold, dead hand.

Since that investigation, I’ve Iost my job, my incurable (except by a transplant) liver disease has progressed, and I’m now gratefully on Medicaid, which I guess I’m supposed to be ashamed of. But like single-payer, I’ve paid into the Medicare/Medicaid fund (1.75% of my wages) my entire working life and now that I need it, it’s there for me. I never have to pay a premium, never have to meet a deductible before insurance will pay a penny, never have to postpone an appointment or prescription refill because I don’t have the co-pay, and never have to spend hours on the phone fighting insurance company bureaucrats to get the bills paid. It has its downside – narrow networks and I’m limited to making $13,300 per year to keep it, but that gives me time to run my organization and help get Bernie elected so everyone can enjoy unfettered access to the same level of healthcare, no matter their economic reality.

The HIV/AIDS community and healthcare
Even before the ACA, the HIV/AIDS community was smart enough to demand a system whereby those in need could get the drugs they must have to survive – ADAP. But ADAP, like the ACA, is at the mercy of the appropriations process of Congress and as evidenced by Trump’s success, hatred and discrimination is trending on the Right and has always been behind the attempts to strip the ACA of anything that would cut into the profits of the insurance companies. If the Louie Gohmerts, Diane Blacks, and Ted Cruzes become the majority with Trump in the White House, imagine the potential harm to Ryan White, including ADAP.

Universal, single-payer healthcare would be publically funded, not victim to the appropriations process. And, life-saving as it’s been, ADAP will no longer be needed because every person living with HIV will get the care and drugs they need at no cost to them except the 2.2% (Bernie’s plan) or 3.75% (H.R. 676) most (making under $250,000) will pay out of their paycheck.

The dedicated activists who’ve watched over all things ADAP since its inception will be free to turn their commitment and skills toward the many other HIV-related issues that need strong, knowledgeable voices – transgender discrimination; prevention; training for both current providers in underserved areas and a new generation of HIV specialists; research involving women; job, housing, and employment discrimination; disability rights, etc., etc.

The ACA is a wolf in lamb’s clothing and unfortunately, the majority of the American public, including those living with HIV, don’t see past the costuming. It’s one of my deepest disappointments that HIV/AIDS community leaders have chosen to perpetuate the myth of the ACA as “the solution” or to parrot the defeatist cynicism of “It’s a nice idea, but it will never happen.” You are the people who showed us the impossible could happen, that unleashing the power of the united people could make big pharma and the FDA do what you wanted and move the government to not just acknowledge you, but legislate in your behalf. You proved that activism CAN work. So why would you not be in this fight?

As people who are getting sicker, even dying, people who have become bankrupt, even homeless, and those who have lost loved ones begin to coalesce around the injustice of the profit-driven system we have now, I hope the long-term survivors will guide a new generation of activists to ignite the spirit of ACT UP and join the rest of us in fueling the political revolution we’ll need to get this done. This country will never be lacking in wrongs to right and problems to solve, but it would be awesome to be able to check healthcare off the list.

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.