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Price hike of HIV/AIDS Drug highlights new role for activism

Price-hike-of-HIVPrice hike of HIV/AIDS Drug highlights new role for activism

High cost of drugs

      There’s no denying that many strides have been made in the treatment of HIV/AIDS. But a pharmaceutical company’s recent decision to hike the price of a drug used by PLWHA from $13.50 per tablet to $750 overnight has some wondering if such progress could be wiped out at the whim of big business.

HIV/AIDS activists and infectious-disease specialists were taken by surprise in September when Turing Pharmaceuticals raised the price on Daraprim (pyrimethamine), a drug used to treat toxoplasmosis, a life-threatening parasitic disease that affects people with compromised immune systems.

For PLWHA who are infected with toxoplasmosis, the price hike causes two complications, says Joel E. Gallant, M.D., MPH, medical director of specialty services for the Southwest CARE Center in Santa Fe, N.M., and former chair of the HIV Medicine Association (HIVMA). “One is the price and one is the accessibility of the drug, and both of them have become a problem with this new arrangement,” Dr. Gallant says.

When people have toxoplasmosis, they typically are hospitalized and treated, and then they must continue to take medication after they are released. Since the price change, some hospitals have not been able to afford to keep the drug on the shelves for in-hospital treatment, and patients have been unable to get the drug once they are released, Dr. Gallant says. “If we can’t get access to good drugs to treat the toxoplasmosis, people could die or develop serious neurologic dis-ability from this treatable disease, so they wouldn’t have a chance to benefit from HIV therapy.”

The Power of Mobilization

The move sparked massive outrage within the medical community and among AIDS activists. In September the Infectious Diseases Society of America and the HIVMA wrote a letter to Turing Pharmaceuticals (pdf) asking the firm to reduce the price.

“This cost is unjustifiable for the medically vulnerable patient population in need of this medication and unsustainable for the health care system,” the letter read.

The issue surrounding the drug hike even made its way onto the presidential campaign trail, with such candidates as Hilary Clinton, Bernie Sanders and Donald Trump criticizing the move.

Some organizations have gotten in on the act. For example, Brooklyn, N.Y.-based VOCAL-NY (Voices of Community Activists & Leaders) led a protest in Turing’s midtown-Manhattan lobby. VOCAL-NY has also protested other drug-pricing issues, such as the high price of certain hepatitis C treatments, says VOCAL-NY’s policy director, Matt Curtis.

At first the public outcry seemed to have an effect, with the company announcing in September that it would back down from raising the price so high, but it didn’t say what the new price would be. By the middle of October, however, the price had not been lowered. In fact, the HIVMA posted on its website its concern “that there has not been an update on the promised price reduction for Daraprim and further that the $750 price per tablet is impacting patient access to this essential treatment.”

The HIVMA has created a website for people to share their experiences resulting from the price hike. On Oct. 21 one health professional wrote, “I am treating a patient with AIDS and CNS toxoplasmosis. As [sic] 10 days after diagnosis, we have been unable to obtain Pyrimethamine for this patient following hospital discharge.” In October the New York attorney general’s office announced that it was looking into whether Turing had restricted access to the drug.

A Sign of Things to Come?

While there are alternative drugs that people could take, “none of them have very good evidence behind them,” Dr. Gallant says. Other options, however, may have to suffice. In October, San Diego-based pharmaceutical company Imprimis Pharmaceuticals said that it could make a less expensive alternative to Daraprim that would cost $1 per pill.

Although the Daraprim situation has received a lot of attention, sadly, it is not as unusual as one might like to think. “There are a lot of good examples of drugs that used to be cheap and generic that have become really expensive,” says Dr. Gallant.

In August, Sen. Bernie Sanders (I-Vt.) and Rep. Elijah E. Cummings (D-Md.) sent a letter to Valeant Pharmaceuticals International seeking information about its decision to raise the prices of two drugs it had bought from another company earlier in the year. “It is unconscionable when drug companies take advantage of consumers by artificially inflating the prices of essential medications just to increase their profits,” Cummings said.

For consumers, such price hikes could be devastating, but activism can make a difference by at least keeping such incidents in the public eye.

The Daraprim situation is a good example of that, Dr. Gallant says. “This one just happened to reach public attention, I think, because it’s an HIV drug, and there are a lot more HIV activists than there are activists for other diseases.”

Tamara E. Holmes is a Washington, D.C.-based journalist who writes about health, wealth and personal growth.

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