Monthly Archives: September 2014

HCV Patient Resource

By: Marcus Hopkins, Blogger

Something that is often discussed, frequently bemoaned, and rarely addressed is the perception that low-income patients often lack the resources to find affordable or no-cost medical treatment. Beyond the barriers to treatment that exist in stigma and financial means, when it comes to chronic illnesses, there is little in the way of an easily accessible, dynamic (constantly updated), and user friendly resource list that can help lead people to treatment options.

My own experience with HIV treatment was very similar. When I first tested HIV-positive in Atlanta, GA, I really wasn’t mentally prepared to seek medical treatment. Instead, I stopped dating people, shut myself off from the option of having any kind of relationship beyond friendship, and tried to live a “healthier” lifestyle. This went on for 2.5 years, until my body finally caught up with me in October of 2007, when I was living in Ft. Lauderdale.

I had wound up in the hospital with an unrelated abscess that had to be operated upon, when I decided to bite the bullet and ask the doctor to run a blood panel to get the numbers related to my HIV virus (Viral Load and CD4 counts). When the blood work came back, I was hit with the reality that all of that “healthy lifestyle” I’d deluded myself into believing was working hadn’t worked – I had progressed to full-blown AIDS. With a CD4 count of 67 (with the average being above 650), it was clear that I was going to have to seek medical treatment to deal with my disease.

Unfortunately, this is where my knowledge of medical treatment began and ended. Having grown up in considerably good health, my visits to the doctor were largely limited; any health issues were dealt with by going to the ER – that bastion of the uninsured and those without primary care physicians – and so, I had to ask the doctor at the hospital for a list of Infectious Disease specialists in the area…and hope that I could find one covered by my insurance.

This type of story isn’t unusual in the treatment community. When people first enter the world of long-term healthcare, they rarely have any idea where to begin the process. In fact, my story is and has been, for the most part, largely typical of American healthcare consumers.

This has been the case for most of human history – the person with the rare disease has no idea where to start getting help to treat it. As the Internet became more accessible and more integrated into people’s lives, finding resource lists and databases for virtually any service became de rigueur in practically every arena…save for infectious disease.

I really should qualify that statement:

Stethoscope resting on computer keyboard

With the rise in popularity and usage, the Internet gave us a virtually (pun intended) unlimited tool that could make finding information as easy as a quick visit to a search engine. All one has to do to find the local Ear, Nose, and Throat specialist is type in their city and the specialty, and they’re presented with a host of various options, each with numbers to call and ways to book appointments.

For those living with HIV/AIDS and HCV, this research is considerably trickier. Because of the nature of the treatments, the number of doctors who can provide adequate care is limited, and, as I discovered, unless you’re going to an HIV clinic, many of those doctors will not see new patients.

Before finding my first Infectious Disease specialist, I spent an entire afternoon calling down a list of twenty-five doctors’ offices, each of which told me that they were not taking new patients, without suggesting other options. That is not to say that this is their “job,” but when we’re talking about infectious diseases such as HIV, is it not incumbent upon healthcare providers and their employees to assist patients in finding treatment, at the very least in an effort to address a public health issue?

After my first visit, I went to fill my prescription for HIV medications. Already faced with the potential embarrassment of filling this prescription, I was met with the even more humiliating reality that, in a single scrip, my prescription benefits on my supposedly full-coverage insurance were maxed out, and they would not cover the cost of my medications.

And so, yet again, I was faced with the task of finding out how to get those covered. This task was even more frustrating than the first, as the pharmacy had no idea what to tell me as I stood at the pick-up counter, panicked and ashamed, on a borrowed cell phone calling my doctor’s office; even they had no clue what to tell me.

It occurred to me, then, as it does now, that in this age of Internet access, why are so many healthcare professionals, as well as consumers, unable to find this information with the same amount of ease with which they can find a pizza place that delivers? We can find lists of pawnshops and check cashing storefronts, but we are singularly unable to provide a functional database of available services for this vitally important need?

When I relocated to Tennessee in 2008, I faced the even more daunting task of finding assistance, as the state did not, at the time, have even the most basic information about their HIV-related services on any state website, and I only found out about their HDAP program through one of my mother’s employees, third-hand, and only because she was just as frustrated as I that I could not find coverage.

With successive moves over the years, the situation has improved immensely. My most recent relocation from California to West Virginia was remarkably easy, as the state had a website with contact information. But, in order to get coverage in the state under their Ryan White program, I had to jump through a lot of hoops, like applying and getting denied for Medicaid coverage, which took 90 days (or, it would have, had I not been insistent upon getting a face-to-face meeting to get my application denied), and even then, I wasn’t entirely sure how their program worked.

These personal anecdotes are not simply to highlight my own struggles; rather, they are to serve as a starting point for further action. Despite being as “in touch” with the HIV/AIDS and HCV communities as I am, even I am unsure of where to direct people to help them get the coverage they need, largely because I don’t even know to whom I should direct their inquiries.

What is needed is a comprehensive, dynamic, and searchable database of information that would be accessible to anyone – healthcare professionals, pharmacies, social service workers, case managers, and, most importantly, consumers; one that can serve as a go-to resource for people to find the care that they need in the area they reside. This is a difficult and arduous task, and one that will require great amounts of time and dedication to ensure that the information is correct, current, and comprehensive.

When I think of how lost I was, and how bereft I felt, when faced with the shock of finding out my medications were not covered, I can’t help but to imagine how helpful a tool like this would have been if the pharmacist could have provided a web address to a site offering me answers for what are incredibly important questions; more than answers, it would have provided me with people to whom I could have directed those questions, and who could have assisted me with getting the coverage I needed.

This tool has the potential allow people living with HIV/AIDS, and who are mono- or co-infected with HCV and other STDs/STIs, to find out what options they have in their area, or on a national scale, if need be, to get them the medical treatment they not only need, but deserve. No person should have to go without medical services and treatment, regardless of their ability to pay, and this sort of database has the potential to serve as a fantastic and invaluable ally in ensuring that the healthcare needs of all people are met.

When we talk about Patient Assistance Programs, Ryan White, Medicaid, and ADAP, and how available they are to patients, the component that we often fail to include is whether or not these patients know that these programs exist, much less how to access them. This is why it behooves us as advocates, educators, and healthcare professionals to have this sort of resource at our fingertips, and it is more important that once we do have it available, we ensure that we consistently share this information with our students, clients, and patients. For many people, this is the missing step that could help with linkage to care, and I, for one, will make certain that I do everything in my power to make it a reality.

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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HCV Stigma

By: Marcus Hopkins, Blogger

When I first transferred into a Chili’s restaurant in Kingsport, TN, I was told by my new General Manager that I “…need[ed] to keep quiet about my HIV+ status;” that “…we [couldn’t] afford to let word that there [was] someone with AIDS working at Chili’s, because they [wouldn’t] come to our restaurant.”

This was in the summer of 2008 – over twenty-seven years after the HIV epidemic was first reported upon in the New York Native, a gay newspaper at the time – and I was taken aback at how HIV/AIDS-related stigma still had such a firm grasp on this small Appalachian community. It was, in fact, the first time I’d ever had a manager specifically tell me that he wasn’t certain if he could continue to employ me if word got out, and the shock of his fear and ignorance (by which I mean his lack of knowledge), rather than leaving me feeling hurt and quieting me down, instead left me angry and ready to fight.

The reason I relate this anecdote is focus the topic not on the virus, itself, but on the stigmata associated with those who have the virus.

Rumors

Rumors = Stigma

Stigma is, in fact, one of the greatest and least surmountable barriers to care that prevent people living with a virus to seek treatment. The fear that others in their community might come to associate them with the negative stereotypes that permeate those living with a specific illness is often so paralyzing that it can completely stymie any efforts to receive the treatment one needs to survive.

HIV isn’t the only virus with which stigmata are associated; HCV, the primary focus of HEAL Blog, carries with it a very serious stigma related to one of the highest risk groups for infection – Injection Drug Users.

The most common characteristic shared across all demographics in those who have contracted HCV is a history of injection drug use – primarily opiates. Excepting those born between 1945-1965, whose faced the additional risk of contracting the virus through unscreened blood transfusions, injection drug use is thought to be the largest contributing factor in the burgeoning HCV epidemic.

That stereotype is so prevalent, in fact, that several people with whom I’ve spoken in my current home state of West Virginia have told me that it is the main reason why they’ve either chosen not to get tested or, if they’ve tested HCV+, they have been very reluctant to answer any additional questions posed by the medical professionals charged with treating their illness.

This is one of the most difficult realities to overcome, when it comes to patients answering questionnaires – surveys and studies in which participants or patients are relied upon to self-report face the fact that many people, who faced with questions about high-risk behaviors, tend to lie in order to make themselves seem “better,” and to preserve what they believe to be their good reputations.

Perhaps, it’s because I am an habitual “over-sharer,” but I am, in fact, of the opposite mindset; to my way of thinking, and many medical professionals will agree with this sentiment, being 100% truthful with your physicians and researches consistently results to both a higher quality of care being provided, and to higher SVR (cure) rates for chronic, yet curable, illnesses.

When patients and participants are honest with those asking the tough questions, a bond of trust is formed between them, allowing for a more open dialogue to occur – a circumstance that can greatly improve the outcomes of any treatment endeavors.

I am, however, in the minority. Unlike most people, I am more than happy becoming the local “face” of HIV/AIDS; the resource to which people can turn whenever they come across something they may not fully understand.

Many people are simply not willing to face that level of public scrutiny, and frankly, who can blame them – their health conditions are no one else’s concern, but their doctors, nurses, and themselves. In order to receive treatment, one need not trumpet their condition all over the land. It is curious, however, that other chronic illnesses, such as Diabetes and various cancers, so easily elicit open communication and survivor mentalities.

With both HIV and HCV, the stigmata attached to the viruses is more commonly associated with high-risk and unsafe personal practices upon which society vocally frowns – something not so pervasive in terms of other chronic illnesses.

In order to better address this public health crisis, HCV educators, advocates, and healthcare providers are going to have to do a far better job of negotiating the shark infested waters of HCV-related stigma, with their students, legislators, clients, and patients. Without doing more work to remove those stigmata, much of the fight will be lost before it’s even begun to be fought.

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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