HCV Treatment Hypothetical

By: Marcus Hopkins, Blogger

Over the past several months, much attention has been paid to the price of the newest HCV medications – so much, in fact, that there has since been an official Senate hearing on the matter. This is one of the first times in recent memory when the price of medications has been so in the forefront of the conversation about treatment options, not only in the activism and advocacy communities, but within the greater nation, at large.

With this level of scrutiny being paid to the pricing structure of the pharmaceutical industry, we, here at HEAL Blog, were wondering how this conversation might be applied in the event of co-infection.

While much attention has been paid to the price of HCV treatments, the same cannot honestly be said for HIV treatments, primarily because these conversations were had two decades or more ago, when HIV meds were first being introduced into the market. When new treatment options are released to consumers, very little attention is paid to the cost of those new medications, largely because, thanks to Patient Assistance Programs (PAPs), insurance, Medicaid, and ADAP, consumers rarely know the actual costs of their medications.

Much of this relates to the fact that the pricing structure of medications is somewhat nebulous, in terms of what determines the cost to consumers – the initial price set by the pharmaceutical companies, the prices negotiated by state/regional ADAP programs, how much the insurance companies are willing to cover, rebates – all of these factors play a role in the out-of-pocket expense.

What the consumer pays truly skews the general perception of the cost of meds; when patients have relatively low co-pays, or no co-pay at all, rarely do they think of the price tag associated with their medications.

My own first experience with HIV medications is what introduced me to the true cost of medications. When I went to fill my very first prescription, my full-coverage insurance refused to cover the price – $1,800 – because it maxed out, in one fell swoop, the cap on coverage. As a result, I was introduced the wonderful world of ADAP – the AIDS Drugs Assistance Program – because I couldn’t afford $21,600 annual price tag.

In 2013, shortly after I had switched over to Stribild, I experienced a lapse in my coverage, and attempted to find out how much it would cost to purchase a few days of meds, out of pocket, to cover the short time until my new coverage kicked in, only to find that a single pill would cost me $68 – running roughly $25,000 annually.

When I moved to West Virginia, I discovered that the cost per pill was significantly higher – roughly $99 – placing the annual cost at $36,000.

So, for the sake of an example, let’s operate from the hypothetical that I became co-infected with HCV (in the effort of full disclosure, this is not the case, at this time). Were I paying the full cost of treatments, I would be paying over $100k in a single year, just to treat an illness.

To further extend the hypothetical, let’s assume that, as recent studies have suggested, twelve weeks of Sovaldi may not be enough to functionally cure my HCV infection, extending my treatment for another twelve-week regimen. Now, we’re nearing $200k for medications in a single year.

This is where PAPs come in to play.

Patient Assistance

Anyone who isn’t in an upper taxer bracket, paying for treatment out of pocket, or even with co-pays, can be prohibitively expensive. In the cases of both Sovaldi and Olysio, both Gilead Sciences and Janssen (respectively) offer programs to help cover the cost of medications, either in part or wholly, if applicants meet the qualifications in their application process – you make under a specific percentage of the Federal Poverty Limit (FPL), or are underinsured.

Additionally, if you make below 138% of the FPL, and happen to live in one of the states that accepted the Medicaid expansion, your treatments may be covered, entirely, or with very low co-pays.

Most patients, however, are unaware that these PAPs exist, and without a caseworker or pharmacist to inform them, many people may opt to skip treatment, altogether.

Beyond pharma-based PAPs, there is also the Patient Access Network Foundation (PAN) – a foundation that offers financial assistance for people living with chronic illnesses. Founded in 2004, PAN helps those who are underinsured by helping to cover costs that are beyond the feasible amounts that patients can afford.

On their website, patients can search for their specific illness, and PAN provides a list of the various assistance options that they provide, along with the requirements to be considered for those programs. There is usually an annual limit to how much they will provide in assistance, but for those in need, this can be a wonderful boon.

Additionally, there is also a program called Needy Meds. Their website provides a relatively comprehensive list of PAPs available for various illnesses. Using their search feature, patients can search for their specific illness, and Needy Meds will provide them with a list of the various programs that are available to cover whichever medication they use to treat their condition.

For those looking for access to their local AIDS Drugs Assistance Program (ADAP), the ADAP Advocacy Association (aaa+) recently launched their comprehensive ADAP Directory. You will find the link for that site at the bottom of this article.

With all of the conversation about the exorbitant cost of medications, it’s heartening to know that there are options out there for patients who cannot afford to pay for their treatments. For more information about these programs, please refer to the links at the bottom of this article.

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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2 Comments

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2 responses to “HCV Treatment Hypothetical

  1. Frances

    This is very educative. Thanks for putting this together. You are so right about the lack of knowledge of assistance programs. There are so many yet so many people have no idea they exist. Additionally, the process of applying for these programs can be extremely tiresome and this becomes a factor that prevents access.

  2. Nice blog post . I am thankful for the specifics ! Does anyone know where I might locate a template a form version to complete ?

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