The State of Hepatitis C Coverage in America – Part 1: ADAP

By: Marcus J. Hopkins, Blogger

The month of December is filled with various holidays, parties, and celebrations. As such, we, here at the Community Access National Network, do everyone the favor of not releasing an 80+-page report to allow everyone the opportunity to take a break from poring over state-by-state treatment coverage charts, sifting through maps, and drinking in the latest news. Instead, we encourage you to pour yourself an eggnog, sift some ground nutmeg on top, and drink in some good cheer. In lieu of this month’s HIV/HCV Co-Infection Watch Report, we are doing a three-part HEAL Blog covering what has been a year of changes for the better, often despite the world around us.

HIV/HCV Co-Infection Watch

In January 2018, we reported that there were 37 states (including the District of Columbia and Puerto Rico) that had expanded their AIDS Drug Assistance Programs (ADAPs) to include coverage for Hepatitis C (HCV) Direct Acting Antivirals (DAAs). To put this in perspective, in our inaugural edition in January 2015, there were only seven states (CA, CO, HI, IA, MA, MN, & NJ) that offered coverage for these drugs. Three years later, and 30 additional states have expanded coverage? That is a sea change of epic proportions.

In November 2018, we reported that there are 39 states (including the District of Columbia and Puerto Rico) that have expanded their ADAP programs to cover HCV DAAs. By comparison, in November 2015, there were 14 states that offered coverage, which, for that year, doubled the number of states covering DAAs. At the time, that was fantastically encouraging.

This trend of expanding coverage continued throughout the following years, and while these gains are impressive – particularly the fact that Mississippi expanded coverage – there is still work to be done. Including the U.S. Territories, there are still 17 ADAP programs (AK, CT, ID, IN, KS, KY, MT, NV, OH, SC, UT, VT, WY, Federated States of Micronesia, Guam, Palau, and the U.S. Virgin Islands) that offer no coverage or cover only Basic HCV treatment regimens (i.e. – Pegylated-Interferon and Ribavirin – treatment regimens that are no longer the standard of care for many years now).

Our colleagues over at the National Alliance of State and Territorial AIDS Directors (NASTAD) have done amazing work over the years to convince ADAP programs to expand their coverage, and Amanda Bowes, a Manager on NASTAD’s Health Care Access Team, presented an excellent set of reasons why ADAP programs choose to offer coverage (which can be found here – http://www.tiicann.org/urls/CANN-PPT-2-Bowes.pptx.

So, what will get these states and territories over the finish line? It is likely going to take an even more severe reduction in the cost of medications. With the impending release of Gilead’s authorized generic versions of Harvoni and Epclusa in January 2019 – the Wholesale Acquisition Cost (WAC) of which will be just $24,000 for twelve weeks of treatment (Hee Han, 2018) – we can hope that more states will decide that they can afford to expand coverage.

Of particular concern are Alaska, Indiana, Kentucky, and Ohio, three states that have been hit considerably hard by dual opioid and HCV epidemics in the past few years (as well as increases in HIV transmission related to Injection Drug Use among opioid and heroin abusers). With many of the newly infected HCV patients already being positive for or simultaneously contracting HIV andthe high burden of opioid and heroin abuse on the poor, it is likely that many of these patients will be eligible for their respective states’ ADAP programs. Coverage for HCV DAAs in these states is critical to ensuring that further costs associated with failing to treat and cure HCV are not shifted onto ADAPs.

As far as the territories are concerned, expansion of their respective ADAP programs to cover HCV DAAs is anybody’s guess. Every article we read about healthcare coverage in the U.S. territories indicates that they are essentially crumbling as a result of a fundamental failure of Congress to adequately fund territorial healthcare programs, including those that provide coverage of HIV or for the poor. The U.S. has long abdicated its responsibility to support these territories, and that is unlikely to change. Worse, still, despite having Congressional representation, these territories have little say in how the U.S. government treats them. If the Trump Administration’s response to Hurricane Maria’s total devastation of Puerto Rico is any indication, it is unlikely that they even know that the other territories exist, much less will they lift a finger to provide any resources to them.

All in all, 2019 may be the year that gets all the remaining states, at least, over the HCV DAA coverage hurdle.

References

• Hee Han, D. (2018, September 24). Authorized Generics of Epclusa, Harvoni Will Soon Be Available for HCV Treatment. New York, NY: Haymarket Media, Inc.: Monthly Prescribing Reference: News: Generic News. Retrieved from; https://www.empr.com/generics-news/harvoni-epclusa-authorized-generics-available-soon-hepatitis-c-virus-infection-hcv/article/802033/

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Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.

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Gilead Sciences Announces Authorize Hep C Generics for the U.S.

By: Marcus J. Hopkins, Blogger

Gilead Sciences, makers of the breakthrough Hepatitis C (HCV) drugs, Sovaldi, Harvoni, Epclusa, and Vosevi, have announced that they will be releasing authorized generic versions of its two most popular drugs, Harvoni and Epclusa, in the United States (Hee Han, 2018). The drugs will be introduced into the U.S. market beginning in January 2019 at a list price of $24,000.

If this seems counterintuitive to Gilead’s business model, consider the following: their most recent drug for treatment-naïve patients, Epclusa, was released in 2016 at a Wholesale Acquisition Cost (WAC) of $74,760 for a 12-week regimen or $890 per pill. In 2017, Merck introduced its own pangenotypic drug, Mavyret, at $39,600 for a 12-week regimen, with the recommended dosage for most patients being eight weeks at $26,400. Essentially, Merck came in at a little over 1/3 the cost of Gilead’s pangenotypic drug and became the fastest adopted drug for both Medicaid programs and AIDS Drug Assistance Programs (ADAPs) in just four months (Hopkins, 2018).

This decision comes on the heels of a rough couple of years for Gilead’s HCV market. The company managed to weather near-unrelenting attacks following the October 2014 release of Harvoni at a WAC of $94,500, quickly dubbed “The $1,000 Pill” by media outlets and advocates who were outraged at what they considered to be an outlandish price point despite the medication’s efficacy. So great was the furor that Congress convened hearings on the matter, reigniting the smoldering embers of rage against pharmaceutical company drug pricing. The optics weren’t great for Gilead, but despite that, Gilead’s stock price and profits skyrocketed as they essentially cornered the growing HCV market both in the U.S. and abroad.

Photo Source: Forbes

Gilead is no stranger to authorized generics. Four years ago, Gilead struck a deal with seven Indian pharmaceutical manufacturers to develop authorized generics to be sold in poor countries roughly $10 per pill, roughly 1% of the U.S. list price (Harris, 2014). This further enraged Western critics who accused Gilead of price gouging. Gilead’s response, at the time, was that they were only charging “…what the market could bear.” Essentially, they were price gouging with the understanding that, regardless of the list price or any pricing negotiations, rebates, or 340B pricing, they were going to dominate the HCV treatment market with their superior product, and the U.S. healthcare system had no real systems in place to combat them.

In 2018, private insurers and public payors alike have quickly switched their preferred drug over to Mavyret from Epclusa. With the introduction of the similarly priced generics from Gilead in 2019, depending upon the uptake by insurers and public payors, it could potentially mean that Gilead could recapture lost ground in the HCV drug marketplace…assuming that other pharmaceutical companies don’t follow suit (they might).

References:

• Harris, G. (2014, September 15). Maker of Costly Hepatitis C Drug Sovaldi Strikes Deal on Generics for Poor Countries. New York, NY: The New York Times: Business: International. Retrieved from: https://www.nytimes.com/2014/09/16/business/international/maker-of-hepatitis-c-drug-strikes-deal-on-generics-for-poor-countries.html
• Hee Han, D. (2018, September 24). Authorized Generics of Epclusa, Harvoni Will Soon Be Available for HCV Treatment. New York, NY: Haymarket Media, Inc.: Monthly Prescribing Reference: News: Generic News. Retrieved from; https://www.empr.com/generics-news/harvoni-epclusa-authorized-generics-available-soon-hepatitis-c-virus-infection-hcv/article/802033/
• Hopkins, M.J. (2018, September 18). HIV/HCV Co-Infection Watch: 2018 Annual Monitoring Report. Washington, DC: Community Access National Network: HIV/HCV Co-Infection Watch. Retrieved from: http://www.tiicann.org/urls/CANN-PPT-1-Hopkins.pptx

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Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.

 

The 2016 Election, and What This May Mean for Healthcare

By: Marcus J. Hopkins, Blogger

The passage of the Affordable Care Act (ACA), also known as Obamacare, included a provision that gave states the option to expand Medicaid coverage in order to cover citizens whose incomes were above the Federal Poverty Level (FPL), but whose incomes still present a significant barrier to purchasing health insurance. Of the 50 United States and the District of Columbia, 32 states (including DC) have opted to expand their Medicaid programs. Nineteen states have opted not to expand access.

Expanding access to Medicaid is an essential piece of the ACA, as it was designed to help increase the number of people with access to affordable healthcare. Because the ACA envisioned low-income people receiving coverage through Medicaid, it does not provide financial assistance to people below poverty for other coverage options. As a result, in states that do not expand Medicaid, many adults fall into a ”coverage gap” of having incomes above Medicaid eligibility limits, but below the lower limit for Marketplace premium tax credits (Garfield & Damico, 2016). Since the expansion of Medicaid under the ACA, 73,137,154 Americans were enrolled in Medicaid/CHIP as of August 2016 (Henry J. Kaiser Family Foundation, 2016).

There are an estimated 2.6 million Americans who currently fall into that coverage gap, and of the states that did not expand Medicaid, four states represent 64% of those people (TX – 26%, FL – 18%, GA – 12%, NC – 8%). When looking at the geographic distribution of those 2.6 million Americans, 91% are in the American South (Garfield & Damico, 2016). Demographically, 46% are White non-Hispanics, 18% are Hispanic, and 31% are Black, and over half are middle-aged (age 35-54) or near elderly (55 to 64). Additionally, the majority of people in the coverage gap are in poor working families.

Photo Source: NBC News

President-elect, Donald J. Trump, as well as the incoming Republican-led Congress and Senate, have openly stated that their first priority, at the beginning of the next legislative session, is the repeal of the ACA. There are very few comprehensive plans being proffered to replace the ACA, and healthcare professionals, providers, payers, patients, and advocates, alike, are currently unsure about the future of the expansion, and whether or not that aspect of the ACA will be retained in the forthcoming repeal.

It bodes poorly for those existing people infected with viral hepatitis, especially Hepatitis C (HCV), who stand to lose coverage if the Medicaid expansion does not survive the repeal, even with the existence of drug manufacturer and private Patient Assistance Programs (PAPs). In order for those PAPs to be accessed, however, people must first know about them; without the aid of social workers, healthcare aides, and advocates, people living with HCV are unlikely to find out about these PAPs, unless this information is provided to them by a doctor or nurse.

An additional concern exists for those recipients of the Ryan White Program. Over the past eight years, HIV/AIDS advocates and policy wonks have been in a near-constant debate about whether to reopen the Ryan White Care Act for reauthorization to address some of the ways in which the current law has not necessarily aged well, in terms of keeping up with newer treatments, costs, and funding paradigms. The concern over the past five years has been that the Republican-controlled Congress would “gut” the bill, cutting out many of the provisions upon which organizations and patients have come to rely. With repealing the ACA having played such a large role in this year’s election, concerns about reopening the act are likely to deepen, rather than abate. It is important to note that many states include HCV therapies under their AIDS Drug Assistance Program’s drug formularies.

The HEAL Blog  will pay close attention to both programs, as well as other HIV and HCV-related issues throughout 2017.

References:

• Garfield, R. & Damico, A. (2016, October 19). The Coverage Gap: Uninsured Poor Adults in States that Do Not Expand Medicaid. Menlo Park, CA: The Henry J. Kaiser Family Foundation. Retrieved from: http://kff.org/uninsured/issue-brief/the-coverage-gap-uninsured-poor-adults-in-states-that-do-not-expand-medicaid/
• Henry J. Kaiser Family Foundation, The. (2016, October 14). Status of State Action on the Medicaid Expansion Decision. Menlo Park, CA: The Henry J. Kaiser Family Foundation: State Health Facts: Health Reform: Medicaid and Health Reform. Retrieved from: http://kff.org/health-reform/state-indicator/state-activity-around-expanding-medicaid-under-the-affordable-care-act/?currentTimeframe=0

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Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.

When the Standard of Care Isn’t Standard Procedure

By: Marcus J. Hopkins, Blogger

This past week, I has the privilege of attending the ADAP Advocacy Association’s AIDS Drugs Assistance Program (ADAP) Regional Summit in Birmingham, AL. This was the sixth such meeting since 2011, with the previous year’s meeting having been held last year in Atlanta, GA. These summits are designed to discuss issues involving state-administered ADAPs that face specific regions, and three times now, this meeting has focused on the South.

This Southern focus is no accident: of the top ten states with the highest incidence of new HIV infections in 2014, Southern states fill five of those spots — including Florida, Georgia, Louisiana, North Carolina, and Texas (Kaiser Family Foundation, 2015). In addition, these states face significant barriers – endemic poverty, geographic barriers to care, inadequate Federal and state funding for assistance programs, and endemic distrust of authority and medical professionals – that largely prevent them from providing low- or no-cost HIV treatment and medications for low-income patients.

Photo Source: Dialect Blog

In addition to leading the nation in regional HIV infections, the South also leads the nation in opioid prescribing. Of the top ten states for opioid prescriptions per 100 people, nine of those spots are occupied by Southern states (Centers for Disease Control, 2014). Alabama, host of this year’s Regional ADAP Summit, currently boasts the highest rate – 142.9 opioid prescriptions per 100 people. States with higher opioid prescribing rates inevitably have more Injection Drug Users (IDUs), which bodes poorly for the burgeoning rate of new HCV infections in these states. In 2015, the CDC released a report linking the increase in new HCV infections to IDUs under the age of 30 (CDC, 2015). The prescribing data, IDU rates, and HCV infection rates combine to create a bleak omen for the South’s burgeoning co-infection crisis.

ADAPs were created to serve the healthcare needs of people living with HIV for whom primary insurance coverage was essentially impossible to find. Combine a lack of access to adequate coverage with the high cost of HIV Direct Acting Agents (DAAs), and lower-income people living with HIV faced (and continue to face) seemingly insurmountable costs of care.

ADAPs are Federally-funded through a grant process; once those funds are allocated to each state (using a formula to determine the amount of ADAP funds each state is awarded), each state is then responsible for operating their own ADAP on the state-level, resulting in a sad-but-true adage: “When you’ve seen one ADAP, you’ve seen one ADAP.” This state-level administration of the program creates a massively uneven landscape, with no one state offering the same services or formulary coverage – what’s true in Tennessee may not be true in Alabama, or Georgia, or North Carolina.

Southern ADAPs almost all fail to provide coverage for the current standard of care for HCV (Infectious Diseases Society of America, 2016), which includes only newer Direct Acting Agents (DAAs) – Sovaldi, Harvoni, Olysio, Viekira Pak, Daklinza, Technivie, and Zepatier – for treatment, as opposed to the poorly tolerate ribavirin- and Pegylated interferon-based treatment regimens. Of the seventeen states that make up the American South, only three offer coverage for one or more HCV DAAs (AR, VA, & TN), while five states – all of which have very high HCV infection rates – offer no coverage, whatsoever (FL, GA, KY, LA, & TX). The remaining states provide coverage only for last decade’s poorly tolerated treatment regimens.

These older regimens often have very high failure rates for curing HCV – achieving a Sustained Virologic Response (SVR) – largely because they are so poorly tolerated that many patients simply cannot complete the regimen before they abandon treatment. In addition to being more easily tolerate, the newer DAAs have much higher success rates in achiever SVRs. This means that patients are more likely to successfully complete their treatments in a single go, rather than repeatedly failing using older regimens. With so few Southern ADAPs providing coverage for these DAAs, clients are much more likely to remain co-infected and continue to drain precious financial resources through repeated unsuccessful treatments.

There are, however, significant costs associated with these DAAs. Each of these drugs boast some of the highest Wholesale Acquisition Costs (WACs) in the pharmaceutical industry. Zepatier, the newest DAA on the market, currently sports the lowest WAC of the pack at the comparatively low price of only $54,000 for twelve weeks of treatment. Even with negotiated pricing and rebate deals between ADAPs and drug manufacturers that may lower those costs by up to 80% off the WAC, many ADAPs, Southern or otherwise, find themselves unable to afford the cost of coverage, leaving ADAP recipients to fend for themselves in an attempt to pay for treatment.

Under the Affordable Care Act (ACA), states were asked to voluntarily expand their Medicaid programs, which would have allowed Ryan White Part B ADAP programs to shift a significant number of their clients off of their rosters and onto their states’ Medicaid programs. However, this voluntary expansion plan ended up working out exactly as expected: the states that most needed the Medicaid expansion to address their healthcare needs ended up being the states that opted not to expand their programs. Of the seventeen Southern states, only seven states have expanded their programs, only three of which (AR, KY, & LA) fall in the area commonly referred to as the “Deep South.”

In these non-expansion states, ADAPs and their clients continue to face barriers related to coverage of the HCV DAA drugs. Of the nineteen states whose legislatures (or governors, via executive order) have opted not to expand Medicaid, only five (ME, OK, SD, TN, & VA) off expanded DAA coverage, while seven (FL, GA, KY, LA, NE, TX, & UT) offer no coverage, whatsoever. The remaining seven states (AL, MS, MO, NC, SC, WI, & WY) provide the outdated, ribavirin- and Pegylated Interferon-based treatments.

Further complicating issues of coverage is that many ADAPs (including Alabama’s and Louisiana’s) have decided to pay for their clients to enroll in private insurance plans through the ACA, rather than pay directly for their care. This can be considerably problematic, because it essentially ties drug coverage to whatever plans are available and their respective formulary coverage. These formularies vary from payer to payer, and in many Southern states, options can be limited to only a handful of insurance providers; in some states, those options are essentially monopolies.

What makes these insurance formularies problematic for ADAP clients is that many plans categorically shunt many of the HIV and HCV DAA and combination therapy drugs into higher tiers that require patients to pay exponentially higher co-pays to fill prescriptions; and, again, each state’s respective ADAP determines whether or not those co-pays are paid for by ADAP funds or left up to the patient.

Anecdotally, my personal Highmark West Virginia Blue Cross/Blue Shield provider currently has an HIV formulary that does not reflect the current standard of care for HIV, covering only a single single-pill regimen (Atripla), which is no longer being actively prescribed. When I contacted Highmark to inform them that their formulary is outdated and needs to come into compliance with ACA non-discrimination requirements, I was told that I was welcome to seek coverage with another insurer. As of April 15^th, 2016, I filed a complaint with the Department of Health and Human Services Office of Civil Rights to begin an investigation into the provider.

While ADAPs go a long way toward helping lower-income HIV patients afford the cost of care and treatment, co-infected clients still face significant hurdles when trying to address their HCV-related care. This situation is slowly being ameliorated, as more state ADAPs add DAAs to their respective formularies. That said, there are still myriad obstacles to overcome in order to ensure that all lower-income HIV and HIV/HCV co-infected patients receive the care they need in order to live a happy, healthy, and productive life.

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Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.

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.

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 National Patient Advocate Foundation, please visit www.patientadvocate.org.

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Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.

The ACA Took My Security Away

By Marcus J. Hopkins, Blogger

I’ve gone on record several times that I’m no fan of the Affordable Care Act (ACA). Several provisions of the act have rubbed me the wrong way since its passage, most of all the requirement that everyone purchase health insurance – a product that can be offered at any price, with no caps on the premium. This year, I finally purchased coverage under the marketplace, after two years of having qualified for Medicaid in the state of West Virginia, and I find that my frustrations are further justified.

I have been a client of WV’s AIDS Drugs Assistance Program for three years, now, and have, for the most part, been satisfied with the services they provide. When I found out that they would cover the price of health insurance premiums, I made the leap, and following their advice, signed up for the plan that seemed to best serve my needs.

President Obama signing the Affordable Care Act.

I did my research, spending hours looking at the three different plans they would pay for, checking the formularies (which were identical) to ensure that my HIV medication – Stribild – would be covered by the prescription plan. I tried to ensure that my monthly premium would remain low enough to be affordable, so I would pose the least amount of burden on the program, to reserve money for others who require more assistance than I.

Imagine my surprise, then, when I checked to see how much my prescriptions would be, and couldn’t find a price for my medication on their website. After calling Highmark West Virginia’s customer service line, I was told that my drug was “covered,” per se, but that I would be paying $100/month out of pocket for it. The customer service representative (CSR) suggested an alternative therapy – Atripla – which is no longer being actively prescribed, because it’s a ten-year-old drug, and there are better options.

Infuriated that I had gotten so much wrong about my coverage, I called my local ADAP representative to see what I should do, only to find out that there wasn’t really much. They will pay for the cost of medications, but it requires approval from the ADAP director, with whom I’ve had little luck getting in contact for the past year. Also, I was now responsible for paying the co-pays for visits and any associated bills for labs.

These are the kinds of problems that ADAP and Ryan White were designed to solve for people. I have, in the past, touted the wisdom of ADAP paying for primary insurance premiums for its clients as a way to defray some of the costs associated with treatment, but now I see the folly – each visit will cost me $30, because my doctor is a specialist; each month, I’ll be shelling out over $100 for medication; God only knows how much labs are going to cost.

For the first time since I qualified for Ryan White, I find myself panicked, because these were problems that I’d never had to face since I gained access to the program. The insecurity and financial worry – how will I afford my treatment; will I be able to still pay my bills just for life, much less for meds – Ryan White was supposed to be there to help me face those concerns.

Finally, after over a week of waiting for a response from either my local representative or my ADAP director, I decided to advocate for myself, and ended up turning to the Patient Access Network (PAN) Foundation – a Patient Assistance Program (PAP) designed to help people afford the cost of medications. I filled out an application online in fewer than ten minutes, and was approved immediately. Sure, there were extra steps involved in added a secondary insurance to my local pharmacy, but it all worked out for me, and now, I won’t have to worry about the cost of medications.

Now…whether or not I’ll have to cover the $30 visit fee for each visit has yet to be seen. I am grateful to the PAN Foundation for stepping up to help out where my ADAP program has failed. I cannot recommend their service enough, and encourage all people who are facing similar concerns to check them out at the link below this paragraph.

• Patient Access Network (PAN) Foundation

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Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.

HCV Workshops

By: Marcus J. Hopkins, Blogger

September 2015 will mark the ADAP Advocacy Association’s (aaa+) 8^th Annual ADAP Conference — A National Conversation about the Ryan White CARE Act and the AIDS Drug Assistance Programs — an event that brings together patients, advocates, activists, program coordinators, and government administrators to discuss issues relevant to the AIDS Drugs Assistance Program (ADAP). The conference is filled with educational and networking opportunities designed to unite all parties in the conversation about what is most important to people living with HIV/AIDS for whom access to ADAP is a vital part of their survival.

Prior to the start of this year’s conference, two free pre-conference workshops are available on September 24^th, 2015, focusing specifically on the burgeoning healthcare crisis that is HCV. These two workshops – Nightmare in Appalachia: How Co-Infection is Disproportionately Impacting Rural Communities and Tactical Changes: Why Comprehensive Harm Reduction Policies Work – will feature a group of panelists (myself, included) who will help to lend some level of insight and expertise to what can often be a confusing situation of which to keep track.

I am very honored to be included on this panel, and look forward to bringing my own experiences dealing with access issues in the Appalachian region. With the recent reveal of the White House strategy to further investigate the root causes and potential solutions to the HCV epidemic sweeping across several states, it seems the perfect time to hear the perspective of someone who not only advocates for Appalachians living with HIV and HCV, but who also lives and works in the area

Having lived for most of my life in and around the Appalachian Region, I can personally attest to the unique challenges people living in this geographically unique region of the United States face when attempting to access low-cost, quality healthcare services. There are many issues working in tandem to create seemingly insurmountable barriers to healthcare:

• Higher incidence and concentration of poverty
• Fewer local and regional healthcare options
• Lower healthcare-related education levels (AKA – Healthcare IQ)
• Generational and traditional distrust of authority/government institutions
• Physical geography (distance and ease of travel to healthcare locations)
• Rampant and resurging stigmata related to health conditions

When people speak of Appalachia, many write the area off as a lost cause. Generations of poverty, drug and alcohol abuse, and social immobility have largely prevented many short-term healthcare initiatives from taking hold. Furthermore, most of the Appalachian states have governments leery of accepting or establishing long-term healthcare initiatives and programs designed to work over time, rather than produce immediate results.

It’s often difficult for people to understand how issues of access really do hamper the ability of Appalachians living with HIV and HCV to receive testing, treatment, and rehabilitative services. This is something I hope to bring to these workshops, and I look forward to helping shed some light on the difficult road ahead.

CLICK HERE to register for the pre-con workshops, or to learn more about them.

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Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.