Aug Sept 2016
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The Advocate

What the Daraprim Price Gouging Means for You

Dr. Kalvin Brewer-Yu and Kit Williamson
Dr. Kalvin Brewer-Yu and Kit Williamson

We all have a right to life in this country, so why is our government standing by and allowing pharmaceutical companies to drastically increase the cost of life-saving medications? Turing Pharmaceuticals CEO Martin Shkreli ignited a firestorm this week when news broke that his company increased the cost of Daraprim, a vital part of treating toxoplasmosis (which disproportionately affects patients with HIV and AIDS), by more than 5,000 percent, from $13.50 to $750 per pill.

Many on the Internet called for a boycott of the company, but it’s hard to boycott a drug if you’ll die without it. Judith Aberg from the HIV Medicine Association estimates that patients could wind up paying upwards of $150 per pill out of pocket, even with insurance. To put this in perspective, a common course of treatment could now cost upwards of $63,000 — up from a more reasonable $1,130 just a month ago. The story even inspired Hillary Clinton to announce her plan to cap out-of-pocket drug expenses to $250 per month.

After the firestorm that this story caused sent his stock prices spiraling, Shkreli announced that he would be lowering the cost of the drug, although he has not yet specified by how much. Clinton had a succinct, elegant response, tweeting the word “Good” in reply. But until pharmaceutical companies face this kind of scrutiny over all their pricing practices and we have stricter measures in place to prevent this kind of abuse, this just isn’t good enough for the people who need these drugs to survive.

I’ve been preoccupied with the cost of HIV and AIDS medications for some time, as I am developing a narrative feature film and companion documentary on the subject. I recently spoke with HIV patients living on Medicaid in Alabama that said they could not always afford an $8 co-pay for their medications — capitalism doesn’t work without compassion, and there are few regulations placed on morality in business. The truth is, even if we cap out-of-pocket expenses, someone will still have to foot the bill for exorbitantly overpriced medication, and the cost will inevitably have consequences for consumers.

To understand what this scandal really means for patients who need access to Daraprim, I reached out to infectious disease specialist Dr. Kalvin Yu, who is currently the chief integration officer at Kaiser Permanente Southern California.

Williamson: What is Daraprim? 
Yu: Daraprim is actually a drug called pyrimethamine, which is what it’s been known as for decades. It is the cornerstone drug of a combination of two or three drugs used to treat toxoplasmosis, an infection in the brain that can cause blindness, seizures, and neurologic deficits in movement. It is acquired by ingesting the toxoplasmosis organism via undercooked meat and contamination with cat feces. People with immune system deficiencies and pregnant women are particularly at risk. 

As an infectious disease doctor who has treated patients living with HIV and AIDS, how have you seen toxoplasmosis affect patients living with HIV?
I think every ID doctor that trained in the late '80s or early '90s has had several HIV patients die from toxoplasmosis. If they survive, it is often with neurologic deficits, such as visual problems or limb weakness, for instance. It's a serious disease in this population, even today, and the differential diagnosis includes brain lymphoma or PML (progressive multifocal leukoencephalopathy), both of which are often life-threatening. 

What’s a course of treatment with Daraprim cost?
We have to keep in mind that toxoplasmosis treatment only works with a combination of drugs, not just one. With the recent proposed price hike, The IDSA has been quoted as stating that treatment would cost at least $336,000-$600,000 per year — just for the Daraprim alone — depending on how much you weigh. The drug is prescribed depending on weight, which means multiple pills per day depending on your weight, so this is not a "simple" one-pill, once a day for all situation. 

Turing Pharmaceuticals CEO Martin Shkreli has described this 5,500 percent increase as a “reasonable profit, not excessive at all.” Does this mean if a patient doesn't have insurance they could be on the line for the full cost of treatment?
If they don't have insurance, they could be facing a bill anywhere from $300,000 to $600,000 for the year. There are other drugs they have to take in combination with Daraprim, so keep that in mind. 

Are there other necessary, lifesaving treatments that cost this much?
The new hepatitis C drugs in the last two years have similar pricing, and HIV medications are also expensive. Although it must be said, this is a drug that has been generic and inexpensive for decades that suddenly shot up in price like this. It is quite shocking.

Shkreli has also said they needed to increase profits to research better treatments — in your medical opinion, is a new treatment for toxoplasmosis needed or is Daraprim effective? 
I don't believe this is the case; in fact, the part of the therapy that some patients do not like is the other drug(s) that they have to take up to four times a day. But Daraprim is not that drug. The argument falls flat when you consider which drug has been hiked up in price. The other point is, anybody can say they are trying to “make things better for the future,” but the reality is this particular action will make things worse immediately and overnight.  

As a medical professional, do you feel that we should we have regulations in place to prevent abuses in the health care industry?  
What we need is reasonable pricing so that people don't lose their homes or ability to be financially stable just because they happened to get infected with something. The same can be said for drugs used to treat some forms of cancer, HIV, rheumatologic diseases, and hepatitis C. We need reasonable drug prices such that pharmaceutical companies can thrive without bankrupting the patients or rendering the therapies unaffordable.  

DR. KALVIN YU is the chief integration officer at Kaiser Permanente Southern California and an associate research professor at the College of Global Health at New York University.

KIT WILLIAMSON is an actor, filmmaker, and activist living in New York City. He best known for playing the role of Ed Gifford on Mad Men and creating the LGBT series EastSiders, which recently premiered its second season exclusively on Vimeo On Demand

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