When Shit Hits the Fan...Daraprim Style!

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

Earlier this month, relatively few people within the healthcare community, patient advocacy movement and frankly the general public probably knew much about the drug Daraprim (pyrimethamine). Not anymore! The drug, along with the pharmaceutical company that recently purchased the rights to sell it, Turing Pharmaceuticals, was transformed into a household name overnight. A 5000% price increase can have that sort of effect.

Turing Pharmaceutical's young CEO, Martin Shkreli, didn't help his new company's PR nightmare with some of his initial comments. But it is Mr. Shkreli who will most likely be responsible for the increased scrutiny over pharmaceutical drug pricing, and the process behind it. Stakeholders -- including physicians, pharmacists, healthcare professionals, pharmaceutical companies, patients -- can have honest disagreements over the issue of drug pricing, and each side has very valid merits behind their respective arguments. What happened with the Daraprim price hike is something entirely different, and even more troubling.

Source: Business Insider

The reaction to the 5000% price hike speaks volumes, too.

The National Alliance of State & Territorial AIDS Directors (NASTAD) immediately pounced on the decision, writing a letter to the Health Resources and Services Administration's Office of Pharmacy Affairs. The NASTAD letter sounded the alarm on behalf of patients living with HIV/AIDS across the country, since the drug is commonly prescribed under the AIDS Drug Assistance Programs (ADAPs). Several ADAPs have reportedly experienced difficulty in acquiring Daraprim at the discounted 340B price.

"It is apparent that Turing has violated HRSA’s non-discrimination requirements for the 340B program, and NASTAD believes that this discriminatory restriction on purchasing at the 340B price is ongoing. NASTAD requests that HRSA investigates Turing’s violations of the non-discrimination requirement and imposes appropriate penalties," argued NASTAD's Executive Director, Murray Penner. [1]

A full version of the letter can be read here.

The Human Rights Campaign's CEO,  condemned Mr. Shkreli and Turing Pharmaceuticals. The HRC statement read, "Your greed in raising the single-pill price from less than $15 to more than $750 is unconscionable. It immediately puts at risk scores of medically vulnerable people, including those living with HIV, and women who are pregnant. Medical organizations have estimated that this predatory move could increase the average cost per year for an adult patient reliant on the drug to more than $630,000." [2]

A full version of the letter can be read here.

The news media smelled blood, and they too focused their attention on the issue. "PRICE GOUGING CEO NOW TARGETING AIDS DRUG ASSISTANCE PROGRAMS," read the headline by the popular online news magazine, HIVEqual. Even business-oriented news outlets couldn't resist raising the red flag, evidenced by "Drug companies are reeling after the Martin Shkreli incident — and it could shake up the entire industry," published by Business Insider.

And of course, Twitter lit up like a Christmas tree. The following are just a few of the hundreds of thousands of the Tweets screaming about the 5000% price increase:

Ironically, there are only approximately 8,000 Daraprim prescriptions filled annually. [3] But that shouldn't matter, and it most certainly doesn't matter to the patients who rely on those prescriptions.

Turing Pharmaceuticals has already back-tracked from its absurd price hike, but the damage is done and lawmakers from both political parties will surely seek to tame the 800-pound gorilla in the room. The egregious example set by Mr. Shkreli must lead to an open, honest dialogue about the cost of health care in this country -- including drug pricing, insurance companies gouging patients, and even the shortcomings of the publicaly-financed health programs in this country. It should be a conversation that the advocacy community can come together with one, unified voice!

[1] National Alliance of State & Territorial AIDS Directors, "NASTAD ASKS FOR FEDERAL INVESTIGATION IN RESPONSE TO DARAPRIM PRICING AND ACCESS," September 22, 2015.
[2] Human Rights Campaign, "HRC President Chad Griffin Calls on Drug Manufacturer to Roll Back Unconscionable 5000 percent Price Hike On Life-Saving Treatment," September 22, 2015.
[3] The New York Times, "Drug Goes From $13.50 a Tablet to $750, Overnight," September 20, 2015.

HCV Workshops

By: Marcus J. Hopkins, Blogger, Community Access National Network

September 2015 will mark the ADAP Advocacy Association’s  8th 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 24th, 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: Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.