Monthly Archives: January 2016

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

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.

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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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Appalachian Syringe

By: Marcus J. Hopkins, Blogger

If the heroin epidemic of the 1970s taught us anything, it’s that heroin use mostly affects the inner city minority communities, so white people who live outside of those cities don’t have anything to worry about, right?

Wrong. Much to the chagrin of anti-drug propagandists, this narrative was then, and is now, entirely false. One of the biggest fallacies of America’s drug policy is the fact that most of the prevention-based legislative efforts have been based off of similar false narratives, shoddy “science (most of which is relegated to stereotyping drug users), and a desire to punish, rather than prevent.

The latter – punishment over prevention – is a recurring theme in American drug politics, and that is arguably best reflected in how our states approach the issue of syringe exchanges. Despite the Appalachian Region (including AL, GA, KY, MD, MS, NY, NC, OH, PA, SC, TN, VA, & WV) having some of the highest rates of opioid prescriptions per 100 people, the highest rates of Hepatitis B and C, and some of the highest opioid-related overdoses in the nation, there has been little political will to enter into the scientifically uncontroversial, but politically controversial, business of syringe exchanges.

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Photo Source: Bathroom Sketch

The premise behind syringe exchanges is this – we understand that people are going to use injection drugs; providing them with a safe way and place to exchange used needles for clean ones helps to stem the spread of virulent diseases that often run rampant within these communities. Sadly, the punishment-based approach to dealing with drug abuse operates off the premise that drug abusers know the risks of their bad habits, and if they’re stupid enough to use injection drugs, they deserve whatever health consequences come their way. Not only is that premise callous, it is also costly.

In the past few years, some states have begun to learn this lesson the hard way – Scott County, Indiana’s 2015 epidemic of IDU-related HIV and HCV, for example – and have begun to recognize that the conventional approach to dealing with the opioid and heroin epidemics has been largely unsuccessful. Rather than quelling the epidemic, the punitive approach to coping with addiction has simply driven it underground where it cannot be effectively monitored, diagnosed, or treated. This has helped to create a dangerous breeding ground for the spread of disease as a result of IDU that was largely thought to have ended in the 1990s.

Thankfully, several states’ law enforcement communities and local governments have recognized that the punitive approach to this problem has not brought about satisfactory results, and have come to be some of the most ardent supporters of both syringe exchange programs and rehabilitative and recovery services – two measures that research indicates as being the most effective tools in stemming the spread of preventable IDU-related disease exposure. These programs also offer support staff who are there to engage participants in confronting their problems with addiction, as well as helping to provide linkage to other important social services, such as housing and healthcare.

While we clearly have a long way to go in providing addiction and recovery services to the underserved communities in Appalachia, there are positive strides being made and steps being taken, although this is happening mostly on the local level. The best way to extend these programs to hard to reach communities is to advocate for their inclusion in state-level legislative initiatives, and doing that will require advocates to demonstrate how these programs help to save states money in these times of economic uncertainty. When faced with empirical and quantitative evidence, even the most fiscally conservative debt hawk can’t deny that these measure save not only lives, but precious resources.
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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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A Conversation About Hypersensitivity

By: Marcus J. Hopkins, Blogger

I was recently pointed to an article about HIV that laid out a quick primer for uninfected people on how to speak to people living with HIV. The author lays out some simple, easy-to-follow guidelines, such as “Don’t Ask – Have you learned your lesson?” and “Do Ask – How are you handling it?” This well-meaning guide helps [ostensibly straight], young, hip people to ask culturally sensitive, yet emotionally supportive questions about HIV that focus on the person, rather than the disease.

As someone who grew up during the initial AIDS epidemic (rather than the one currently developing amongst young MSM populations 16-35), I was amazed at how each of the purportedly thoughtful “Do Ask” questions comes across not only as someone taking an interest in how the HIV-Positive person is coping, but also as someone who greatly pities the person on the receiving end of these questions. Questions that are designed to be “understanding” and “empathetic” more often come across as making the other person feel “pathetic.” Moreover, if I were on the receiving end of some of these questions, I would find myself wanting to bludgeon the person asking me, because it would be very clear that they aren’t asking a question for which they want any real answer.

“How are you protecting yourself from transmitting?” This is a “Do Ask” question, rather than “Is your boyfriend HIV-Positive, as well?” What the hell? How are my preventive measures the business of anyone other than my sex partners? If anything, the proposed question is more invasive of privacy than the initial query about the boyfriend.

These questions follow a recent trend of “delicate treading” that has infected the world of HIV education, largely in response to this younger generation’s seeming inability to handle direct confrontation in any sort of adult manner. Questions can never be directly posed about sensitive subjects out of fear that the person being asked will crumble into a pile of weeping ashes. In fact, this kind of mollycoddling is specifically spoken against by Health Communication professionals and educators, in no small part because it makes the person on the receiving feel as if they’re children, and belittles their intelligence.

hivstigma

Photo Source: About.com (Health)

HIV stigmata have not eroded over time thanks to delicately tiptoeing around uncomfortable questions; it has been eroded away by people who are frank, honest, and unafraid to answer tough, probing questions, and who are unafraid to be open about their HIV status regardless of what others think. This is the same of stigmata associated with all chronic illnesses, including HCV.

We do a disservice to the educational efforts of advocates and professionals when we attempt to “correct” lines of questioning from people who are not living with a disease. It is, in fact, the least socially acceptable question that winds up providing the greatest opportunities for education, because answering those types of questions helps to correct misperceptions and leaves the questioner with food for actual thought. It is high time that we stop trying to plant socially appropriate questions into interested audiences, and start getting real about answering questions that make us uncomfortable; the opportunities can only serve to further understanding and acceptance, as well as provide those of us who aren’t crying from hypersensitivity the chance to grow.

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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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