RxRights year in review – 2016
For more than six years, RxRights has been working to promote and protect your access to safe and affordable medicine. After Martin Skhreli raised a drug’s price 5000 percent overnight late in 2015, this year began with hope of serious action to reduce drug prices.
While drug prices continued to overburden Americans in 2016, we’ve made significant progress this year. In our nonprofit’s life, this issue has never been so prominently displayed in the media.
Members of Congress came together to write letters and hold hearings on the issue. Drug makers like Mylan were forced to reduce prices and answer Congressional inquiries after public outcry over big price jumps, as in the EpiPen.
An April AARP survey found that 81% of Americans ages 50 and up think prescription drug prices are too high and nearly 9 in 10 believe our leaders need to take action to address the problem. An October Kaiser Health Foundation poll showed 74 percent of Americans view high drug prices as a top health care concern for Congress and the next President.
This is heartening. All along, we’ve said we need YOU to make a difference on this issue. Without large numbers of Americans speaking out about exorbitant drug prices, drug makers will continue to charge as much as they want for our needed treatments.
Thanks for standing up to speak out! Each person who supports us gives us strength and motivation to keep fighting for the cause. Here’s a sampling of what we accomplished together in 2016.
Cultivated Allies Who Support Access to Affordable Medicine
- Connected with groups concerned with the price of insulin such as: T1International and a group at Yale School of Medicine led by Dr. Kasia Lipska.
- We signed on to T1International’s Type 1 Diabetes Access Charter promoting the idea that everyone in the world should have enough affordable insulin and syringes.
- Signed on to a letter to the National Institutes of Health, along with 10 other public interest organizations, calling for a public hearing and expressing support for “march-in” rights, an extreme measure to reduce the price of Xtandi, a prostate cancer drug that costs $129,000 per year.
Public Policy & Legislation
- Sent a letter to 43 legislators who expressed support for personal importation in the past. In the letter, we thanked them and we called upon them to renew their support for this virtual lifeline to medicine.
- Worked with various members Congress to support the legalization of personal drug importation and other legislation aimed at making medicine more affordable.
- Lee Graczyk, lead organizer of RxRights, spoke at a press conference in St. Paul organized by the offices of Representative Keith Ellison (D-MN) about the fact that pharma has become addicted to price increases. Graczyk mentioned the extreme EpiPen and Daraprim cases and pointed out that even smaller increases in a drug’s price can have a dramatic impact on individuals with fixed incomes.
- Senator Bernie Sanders (I-VT) and Representative Elijah Cummings (D-MD) sent a letter calling on the Justice Department and Federal Trade Commission to investigate potential anticompetitive conduct among the few pharmaceutical companies manufacturing medication to treat diabetes. They also asked RxRights to collect stories from our supporters who are impacted by the high price of insulin.
- Worked with Representative Lloyd Doggett (D-TX), Knowledge Ecology International and the Union for Affordable Cancer Treatment on march-in petition regarding Xtandi.
We enlisted your participation in a number of actions to protect and ensure access to affordable medicine in 2016. Thank you to those who participated!
- Petition to legalize importation: 5547 signatures
- Advocate letters to Congress members who have expressed support for importation in the past: 673 messages sent.
- Advocate letters to drug makers about high insulin prices: 1785 messages sent.
- Novo Nordisk responded by increasing the income level for those eligible for its patient assistance program.
- Advocate letters to legislators in border states, inquring about whether they support importation: 304 messages sent.
- Advocate letters to the Secretary of Health and Human Services and the Director of the National Institutes of Health regarding Xtandi march-in rights: 1322 letters sent.
- Encouraged advocates to contact legislators during the Fourth of July holiday when they were in their home districts.
- Urged advocates to write to President Obama asking him to use his executive power to direct to enable personal drug importation: 649 messages sent.
- Collected stories from Americans affected by the rising price of insulin for Senator Sanders’ office
- Surveyed advocates regarding insulin prices and how they (or their loved ones) are affected.
Press & Media Outreach
- Lee Graczyk, our lead organizer, was asked to share his expertise on the John Gambling Show. You can listen to the radio interview here (discussion with Lee starts about 17 minutes and 30 seconds into the program).
- Sent a response to the Star Tribune editorial by Senator Amy Klobuchar (D-MN) “It’s up to Congress to curb the high costs of prescription drugs.”
- Wrote an opinion piece published in The Hill with Tod Cooperman, our ally from PharmacyChecker.com regarding the fact that both of presidential candidates agreed on personal importation as a way for Americans to access lower cost medications.
- Issued a statement, along with other patient advocates and businesses regarding the right of Americans to engage in the importation of prescription medications from safe, credentialed international pharmacies. Urged coverage of this issue at the Presidential debate.
- Issued a joint press release with our ally Dan Hines publisher of TodaysSeniorsNetwork, RxforAmericanHealth and the American Rx Bill of Rights blogs. The letter to President-elect Trump asked him to make good on his campaign promise to legalize personal importation.
- Our ICANN petition (25,000 signatures) in opposition to the .pharmacy domain was mentioned in an Electronic Frontier Foundation article: How Big Pharma’s Shadow Regulation Censors the Internet.
Blog Posts & Education
Provided information about key issues:
- Updated consumer resources for saving on prescription drugs and tips on how to find a safe online pharmacy.
- Chronicled how 50 members of Congress sent a letter urging the Department of Health and Human Services (HHS) and National Institutes of Health (NIH) to use their authority to bring relief to consumers struggling to pay exorbitant drug prices
- Wrote about how Martin Skhreli refused to cooperate with two Congressional inquiries into drug prices and was an unresponsive witness at a House Oversight and Government Reform hearing set to discuss methods and reasoning behind recent drug price increases as well as the potential problems with speedy generic drug approval.
- Provided information about where the Presidential candidates stand on drug pricing.
- Gave guidance on e-prescription issue.
- Updated supporters on the Senate’s Special Committee on Aging hearing with Valeant.
- Wrote about how an 86-year-old man in Florida killed his wife of 50 years earlier this month because she was suffering and they couldn’t afford her medicine.
- Gave an update about how imported medication was seized in Chicago and the need to prevent confiscations.
- Covered the House Oversight and Government Reform Committee hearing on Mylan and the EpiPen price hike.
- Wrote about Francis Collins’ response to the Xtandi petition for march-in rights.
- Responded to Internet censoring of safe online pharmacies by Bing and .pharmacy domain.
- Criticized the new National Association of Boards of Pharmacy (NABP) report and its continued bias against pharmacies based outside the U.S.
- Called for drug pricing transparency, citing Minnesota’s Attorney General Swanson and her request for a federal audit of drug pricing information.
- Blogged on drug coupon programs and the fact that they’re part of the drug pricing problem.
- Wrote a critique of the 21st Century Cures Act, which provides big benefits to pharmaceutical companies.