Monthly Archives: January 2015

A New Patient-Centric HIV/HCV Co-Infection Resource

By: Marcus Hopkins, Blogger

This past week, the Community Access National Network (CANN), of which the HEAL Blog is a part, introduced their latest endeavor – the HIV/HCV Co-Infection Watch. This new project aims to bring attention to what we at HEAL Blog have been saying from Day One: the HIV/HCV co-infection crisis in America is not only looming, but is already here.

Hepatitis B- and C-related liver disease has become the leading cause of non-AIDS-relate death for people living with HIV. Viral Hepatitis progresses faster and causes more liver-related health problems in people living with HIV than among the HCV mono-infected population. As such, we here at HEAL Blog, as well as others around the nation, have been closely monitoring the situation in terms of treatment.

Combating HCV had been an arduous and side effect-ridden process, laden with drug therapies that many patients quit taking because of their intolerability.   In 2014, however, newer drug therapies with much higher SVR (Sustained Virologic Response – “cure”) rates and greater tolerability finally received final FDA approval, and became available to consumers. While these new therapies are excellent alternatives, the high cost of treatment has left many parties with vested interests in affordable and accessible health care gravely concerned about how these medications will be afforded, either by consumers or payers.

Compounding the concern is the fact that over half of those living with HIV/AIDS are living at or below the Federal Poverty Line. As such, many of these patients rely on programs such as Medicaid and the AIDS Drugs Assistance Program, a Federally funded base grant included in Part B of the Ryan White Care Act. Without these programs, many HIV/HCV co-infected patients would not be able to effectively combat their HCV, potentially leading to an outsized morbidity rate in comparison with the HCV mono-infected population.

It was for these reasons that the HIV/HCV Co-Infection Watch was created.

The primary function of the Watch is to monitor the states of these programs on a state-by-state level, researching and providing information about which states’ Medicaid and ADAP programs provide coverage for HCV treatment. This will eventually include a comprehensive list of which states cover which types of therapies, whether or not Prior Authorizations are required, and whether or not these programs provide patients with additional linkage to coverage options via Patient Assistance Programs (PAPs).

Additionally, the Watch, along with CANN, will be advocating for changes in the way that HIV and HCV are monitored, as the Center for Disease Control & Prevention (CDC) reporting of co-infection and morbidity statistics is very widely estimated. At present time, most states’ Epidemiology Departments track HIV and HCV separately, without checking to see if there is any intersection between diagnoses. As such, gathering accurate statistical data is incredibly difficult.

Eventually, we hope to turn the HIV/HCV Co-Infection Watch into a dynamic website, serving as a portal for patients, providers, payers, and advocates, providing up-to-date data for each state, as well as contact information and other helpful co-infection-related resources.

The HIV/HCV Co-Infection Watch, while providing data-driven content, will be created from a patient-centered focus. Our goal in developing this project is to monitor and effect changes that benefit the patient, the primary question being, “As a patient, would I find this process user-friendly?”

As anyone who’s ever relied upon one of these programs can tell you, rarely is this the case. Aside from the myriad forms required just to apply for these services, the income requirements are often not clearly defined, state-run websites can be user-unfriendly, and the process is simply too confusing. When people are faced with a life-threatening illness, this is the process that should be the least of their worries. We aim to provide easy-to-implement suggestions that can help to provide all concerned parties with a better experience.

Obviously, this undertaking is quite daunting, and as such, it will be a growing project as the year goes forward. I am, however, very excited to be working with the Community Access National Network to bring those ambitions to fruition. Thank you for continuing to read HEAL Blog, and for staying tuned for the great things to come in 2015.

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 Look Ahead at HCV in 2015

By: Marcus Hopkins, Blogger

Here, at HEAL Blog, we like to focus on the “state of…” The state of HIV treatments; the state of the health care industry; the state of health care coverage – all of these states are important in understanding the [often needlessly] complex health care system that we have cultivated in the United States.

Of particular concern to patients and advocates, alike, is the state of coverage, after the fact. Let’s face it – when people become ill, the last item on their checklist of concerns is, “How to Pay for Treatment.” The reality of treatment costs often doesn’t become a reality until you receive that first bill from the hospital, often to be stuck with sticker shock. “It can’t possibly cost that much for them to [insert procedure].”

Worse, still, is when you begin to look at an itemized copy of what you owe. Aspirin for $50 a pill; a gauze bandage that you can buy at the drug store for $2.50 can go for nearly $100; a specialist from New York to “consult” about a treatment, when you’ve never actually seen said specialist, and in fact, find out that he never stepped foot in your hospital – these are the costs over which patients become infuriated and insurance companies haggle.

A trip to the Emergency Room can lead to bills ranging in the lower thousands of dollar, despite the likelihood that most of your visit was spent sitting in an overcrowded waiting room, surrounded by the sick and injured, just to make your way in to see a RN (and, maybe – if you’re lucky – a doctor). Extend that visit to a multi-day stay in the hospital, and you’re looking at $10,000, easily.

As a patient advocate, I understand how frustrating it can be to try get in contact with someone who knows the rubric against which these itemized receipts are compared. How does the hospital come to the decision that aspirin should cost $50?

The truth is that, like everything involving the American health care system, it’s both complicated and needlessly complex. So many factors are taken into account that, in the end, roughly the only thing that isn’t calculated is whether or not the patient recovered.

This, to my way of thinking, is the overarching problem with our concept of health care – in the end, it has virtually nothing to do with patients, and everything to do with profits.

Don’t get me wrong – it’s not that I believe doctors and nurses don’t want to see patients get better; they are the heroes in this analogy; rather, it is the fault of administrators, private interests (shareholders), and insurers who, as opposed to caring about people, are more concerned with lining their pockets.

I have no illusions that health care was ever, in the history of human existence, without cost. Bartering and money exchanges have virtually always been the way of the game. We have, however, reached a point where the American health care system is an international joke. We spend more on health care than virtually any industrialized nation, and yet, on average, we see fewer positive results and more people struggling to pay for their treatment.

When you factor in that a patient has a chronic illness that will require them to remain on medications for the rest of their lives, you’re looking at a situation that will never get better without radically changing the system, whether or not those with a vested interest in putting profits over people like it.

Man holding a pen with a notepad, looking into a crystal ball...looking perplexed.

Photo Credit: The Telegraph

In 2015, we are likely to see more of the same. Despite having access to health insurance, the cost of coverage for people living with HIV will continue to go up. Insurers who are now required to cover people with pre-existing conditions have long dreaded having to do so, largely because it is guaranteed that their expenses (most of which the insurers, themselves, helped determine over the past thirty years) are going to be astronomical.

This past May, two consumer groups filed federal complaints against four insurance providers in the state of Florida, asserting that these insurers discriminated against people with living with HIV by making their drugs more expensive and difficult to obtain. This was done by placing medications on payment tiers that were the most restrictive (read: highest), meaning that consumers were required to exhausted their deductible, and then, pay 40% (average) of the cost of the drug, out of pocket. Additional, certain insurers placed restrictions on the prescriptions, requiring advance doctor authorization (which is often not possible in time sensitive matters) or limit prescriptions to thirty-day supplies (meaning that a new order was required, rather than having a specified number of refills).

Each of these four insurers agreed to “take steps” to reduce costs for HIV patients, though what those steps are, and whether or not they will actually be effective, has yet to be seen.

CoventryOne (an Aetna subsidiary), for example, placed every single HIV drug, including all generics, into their top tier. They did not, however, place every single treatment option for Diabetes or Rheumatoid Arthritis in the highest payment tier; as such, it is likely a valid claim that this is a discriminatory action.

I mention Aetna because, as of Friday, December 19th, 2014, Consumer Watchdog filed a federal suit against Aetna for HIV discrimination in San Diego. The suit asserts that Aetna is in violation of the ACA because they require HIV patients to obtain their medications through its own mail-order pharmacy.

For patients like myself, the ease of mail-order pharmaceuticals is a net win; for other patients – those who prefer a more human connection with their pharmacists – the likelihood that doses will be missed increases, as they lose that relationship.

This is, unfortunately, one of the “steps” that Aetna is taking to “lower the cost of treatment” for HIV patients. Effective as of today, the new policy applies to anyone who purchased individual coverage with Aetna, and, seemingly out of step with this dedication to lowering treatment costs, also raises the out-of-pocket amounts that patients must pay for treatment, sometimes doubling the amount.

It is clear to me that the people who devise these “steps” have never actually lived with a chronic illness, or with the high costs associated with one. They have likely never worried about where they’re going to get their meds for the next month, or filled out the mountains of paperwork required to get assistance with coverage; it’s doubtful that they’ve ever had to face the concern about whether or not they can afford a visit to their doctor, because they cannot afford the co-payment, much less to pay for whatever the insurance company refuses to cover.

We are rapidly nearing the point in our history where the health care marketplace will have to be revolutionize, yet again, in order to actually provide better coverage options for consumers, rather than just gathering them together into a single location, just so consumers can pick the least worst option.

Hopefully, 2015 will be better for HIV+ consumers; maybe, we’ll get lucky, and some insurer will come along and say, “This is simply unaffordable; let’s actually do something about it.” In all likelihood, however, we’re going to see more of the same, and that, my friends, is wicked depressing.

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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