Online Petition Against High Drug Prices Goes Live

Roxanne Nelson

March 13, 2015

Cancer drugs with six-figure price tags are here to stay, according to an analysis by Bloomberg Business. Even though the oncology community, health insurers, and even President Obama have all spoken out against high costs, prices continue to rise with each new drug that enters the marketplace.

So, a prominent oncologist has decided to tackle the problem from another angle — that of bringing the patients to the forefront of the issue.

As previously reported by Medscape Medical News, Hagop Kantarjian, MD, PhD, chair of the Department of Leukemia at the University of Texas MD Anderson Cancer Center, in Houston, has been a driving force behind an online petition aimed at garnering more than 1 million signatures in order to put pressure on the government to do something about the high prices.

"If we collect enough signatures — hopefully over 100,000, but we are hoping for a million — we can deliver it to our elected representatives and to the White House and ask them to stop representing special interest groups and represent the people who elected them," Dr Kantjarian said in an interview. "This is, after all, a democracy, unless the United States has changed into a 'pharmaceutocracy.' "

 
This is, after all, a democracy, unless the United States has changed into a 'pharmaceutocracy.' Dr Hagop Kantarjian
 

Time for Patient Activism

The discussion on high cancer drug prices started 2 years ago, said Dr Kantarjian, who authored a 2013 Blood editorial about high prices that was signed by 120 specialists.

"And we have not been making any progress. The only party that is most harmed and least engaged are cancer patients themselves, and now they need to step up to the forefront," he told Medscape Medical News.

Now it is time to follow the example of AIDS, he noted, in which patients became activists and accomplished changes not only in the way drugs were being developed but also in making therapies more accessible.

"Strategies from AIDS advocacy resulted in the approval of 35 drugs within 2 decades," he told Medscape Medical News. "These drugs have allowed patients to live normal and long lives."

A Win-Win Situation

AIDS patients became increasingly impatient and frustrated with the Food and Drug Administration's (FDA's) slow drug approval process and with the National Institutes of Health and pharmaceutical companies who seemed to be ignoring their plight. So they turned to activism, forming groups such as AIDS Coalition to Unleash Power (ACT UP), which exerted pressure on both the federal government and private corporations to speed the testing and approval of medicines.

"They advocated so strongly that they changed the way research is done," Dr Kantarjian pointed out. "Instead of having long, exhaustive bureaucratic studies that look at survival as an endpoint, they changed the endpoint to viral load at 6 months. Because of their advocacy, they were able to get drugs on the market more quickly."

But more importantly, their advocacy made drugs more available from a financial standpoint. The cost for therapy today is about $10,000 to $18,000 a year, a price tag that is far more affordable than the cost of most cancer regimens.

"It is a win-win situation for all," Dr Kantjarian pointed out. "The AIDS patients are able to afford the drugs, the cost to our healthcare system is low, and the pharmaceutical companies benefit because they have much better penetration into a stable market where more people are alive and need the drugs for the rest of their lives."

This is the model that also needs to be followed for cancer, he emphasized. As the era of precision medicine and targeted therapy unfolds, patients will be taking medication for longer periods, perhaps for a lifetime, as with imatinib (Gleevec, Novartis Pharmaceuticals Corporation) for chronic myeloid leukemia, a situation that is quite different from taking short-term courses of chemotherapy.

Dr Kantjarian contends that it is in the interest of pharmaceutical companies to lower prices, because they will make more money in the longer term.

"If the pharmaceutical companies change their strategy from greed and profiteering, which may benefit them in the short term, even at the expense and harm of the patient, they will benefit in the long term," he said. "As with AIDS, they will have better market penetration into a stable market, there will be more people alive who will be taking this drug for a long time, and therefore, more profit for the drug company. By doing good, the pharmaceutical company will do well."

 
By doing good, the pharmaceutical company will do well. Dr Hagop Kantarjian
 

Differences Between AIDS and Cancer

There are differences between the early AIDS activists and current cancer patients. AIDS patients tended to be young, healthy men who potentially had a long life ahead of them, if only an effective treatment or cure could be discovered. In the 1980s, there was only a primitive version of the Internet, and news did not travel instantaneously. Rather, it was delivered the old fashioned way, by television, radio, and newspapers. But even without email, texting, tweeting, and instagrams, AIDS patients were able to become extraordinarily well organized and make themselves heard loud and clear, taking to the streets with a boldness not seen since the Civil Rights Movement decades earlier. In 1988, for example, ACT UP successfully shut down the FDA for a day, and a year later, they halted trading at the New York Stock Exchange.

Dr Kantjarian acknowledges that overall, cancer patients are a very different group. Most are older, many are quite ill and are simply fighting for the next day of their life, and they are not well organized. Although there are already many cancer advocacy groups, a large number of them receive substantial support from the pharmaceutical industry, and they are not about to speak out against high drug prices, he noted.

Cancer-Patient Movement

A cancer patient–based grass roots movement is needed to advocate against high cancer drug prices, Dr Kantjarian believes. Although cancer patients may not be ready to march on Washington or hold a sit-in down at City Hall, they have the electronic world at their fingertips. Patients have come together now and have started a petition to bring down drug prices, and they have also put up an accompanying Facebook page.

The petition, which has now gone live and is gathering signatures, spells out strategies that can be implemented to lower drug costs. These include the following:

  1. Allowing Medicare to negotiate drug prices

  2. Allowing the importation of cancer drugs across US borders for personal use, because prices in Canada are sometimes close to 50% less for the same drug

  3. Enacting and signing into law new federal legislation that prevents drug companies from delaying access to generic drugs ("pay-for-delay") and extending the life of drug patents (patent "evergreening")

  4. Creating a post-FDA drug approval mechanism or organization/group/concerned parties (that include the strong voice of patients and their advocates) to estimate/propose a fair price for the new treatment, based on its value to patients and healthcare

  5. Allowing organizations such as PCORI (Patient Centered Outcomes Research Institute, created through Affordable Care Act initiatives to evaluate the benefits of new treatments) to include drug prices in their assessments of the value of drugs and treatments

  6. Requesting nonprofit organizations that represent cancer specialists and their patients ― such as the ASCO, ASH, ACS, LLS, and NCCN ― to develop guidelines to incorporate prices of drugs relative to treatment value

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