Press Release

Patient Group Applauds Passage of Maine Drug Pricing Bill

WASHINGTON, DC — Patients in Maine are celebrating the passage of a new law that would help Mainers understand why prescription drugs prices keep rising. Patients For Affordable Drugs NOW, a patient advocacy organization, applauded passage of the bill.
 
“My 5-year-old son, Dakota, needs insulin to live,” said Sabrina Burbeck, a single mom who lives in Old Town. "When drug corporations charge $200-a-vial for a drug invented in the 1920s, we should all worry and demand change. There is no justifiable reason that his insulin costs keep going up, and the fear of my son losing his life-saving medicine keeps me up at night.”

A bipartisan group of Maine state legislators passed LD 1406 in April. The legislation, which became law yesterday, allows the Maine Health Data Organization to gather information from drug corporations about their pricing practices and to report its findings to citizens in Maine.
 
Patients For Affordable Drugs NOW is a bipartisan advocacy organization focused exclusively on policies to lower drug prices. To maintain its independence, P4ADNOW does not accept funding  from organizations that profit from the development or distribution of prescription drugs.
 
For Maine patient interviews, contact Juliana Keeping.

National Patient Group Announces First Endorsement in Campaign to Lower Drug Prices

New patient group planning to spend six figures in WV; David McKinley earns support thanks to his work to speed generic drugs and lower prices for patients

WASHINGTON, DC — Patients For Affordable Drugs NOW, a bipartisan national patient organization focused on policies to lower drug prices, announced its first endorsement of the election year will go to Republican Congressman David McKinley (WV-01). McKinley earned the support of patients thanks to his leadership on legislation that would lower drug prices, his independence from Big Pharma, and his work to protect rural hospitals from paying more for prescriptions for low-income West Virginians.
 
“David McKinley has consistently been on the right side of legislation to lower drug prices, including introducing a key bill aimed at speeding cheaper generics to market,” said David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs NOW. “The truth is, patients and consumers need David McKinley because he’s working to bring cheaper drugs to market that will help West Virginia families and all Americans save money. We are proud to give him our support and look forward to working for his re-election this November.”
 
In 2017, Rep. David McKinley co-introduced the FAST Generics Act, a bipartisan bill that would prevent brand drug corporations from gaming our system and blocking cheaper generic drugs from coming to market. Unlike many members of Congress, he has taken very little in campaign donations from big brand drug companies. This congressional session McKinley also stood up to the drug lobby’s push to raise drug prices for rural hospitals by opposing harmful cuts to the 340B program.
 
Patients For Affordable Drugs NOW will spend six figures to educate, activate, and mobilize West Virginia voters in support of David McKinley’s reelection. The nation’s only independent patient group focused exclusively on lowering drug prices will support McKinley through direct voter engagement, organizing, and advertising around the issue of drug pricing.
 
Americans have consistently said that lowering prescription drug prices should be a top priority in Congress. Millions of Americans routinely choose not to fill prescriptions or skip doses to save money, according to a report from the National Center for Health Statistics.

Patients For Affordable Drugs NOW aims to act as a counterbalance to the pharmaceutical political machine. Drug corporations spent $20 million in lobbying and donated $246 million to politicians in the last election cycle alone. P4ADNOW works across the country on a bipartisan basis to educate the public on policy issues and elevate stories of patients struggling under runaway drug costs.

Screen Shot 2018-04-17 at 4.13.46 PM.png

Oregon Passes New Law To Lower Drug Prices Despite Pharma Objections

WASHINGTON, DC — Patients For Affordable Drugs NOW Campaigns Director Janice Rottenberg issued the following statement after Oregon Governor Kate Brown signed HB 4005 into law today.

“This bill brings much-needed transparency to drug costs in Oregon, and it builds momentum as more states pass legislation to end drug pricing abuses. Today is a good day for Oregon and for Americans demanding action to lower outrageous drug prices." 

Background

  • “Internal documents reviewed by The Register-Guard show the pharmaceutical industry’s involvement was ­intended to be kept secret, both from Oregonians enlisted to sign the prewritten letters and legislators who would receive them.” [Register Guard, 2/9/18]

  • Among those who testified in favor of HB 4005 was Ann Neilson, a retired nurse from Oregon and Patient Advocate for Patients For Affordable Drugs NOW. She told Oregon lawmakers, “When working as a nurse, I discovered scores of patients taking half their prescribed doses or skipping doses. I believe patients deserve to know why drug prices are increasing.”

  • Oregon is the latest state to step up and tackle drug pricing.

    • Nevada just passed one of the strictest drug pricing transparency laws in the country [Business Insider, 6/15/17]

    • California Governor Signs Law To Make Drug Pricing More Transparent [NPR, 10/10/17]

    • Maryland Officials Tout New Generic Drug Price-Gouging Law [Associated Press, 10/31/17]

###

If Congressional Spending Bill Includes Pharma Giveaway, it Should Include Patient Provision Too

WASHINGTON, DC — Big Pharma is lobbying Congress to repeal a rule that requires drug corporations to pay a higher share of prescription costs for people on Medicare. At the same time, patient advocates descended on Washington, D.C. to tell lawmakers not cave to pharma lobbying without supporting the CREATES Act, a bill to lower drug prices.

“If Congress caves to pharma and repeals drug cost protections for Medicare beneficiaries in the donut hole, the least they can do is stop stalling and pass the bipartisan CREATES Act,” said David Mitchell, a cancer patient and the founder of Patients For Affordable Drugs NOW.

According to news reports, lobbyists and lawmakers “are working to relax a law that would force drug makers to pay a higher percentage of costs for Medicare beneficiaries.”

The CREATES Act (S. 974 and H.R. 2212) would stop big drug companies from blocking competition by refusing to allow their brand name drugs to be used in testing needed to get approval for generic competitors. If passed, patients would get access to lower-priced generic drugs faster.

Among the patients visiting lawmakers are:

  • Lisa Driggers, of South Carolina, who said: “Just one of my husband's chemo drugs is over $22,639.00 for a 21-day supply. Ungodly!”

  • Bob Parker, of Colorado, who wrote: “For most of the past 8 years, I have cost the government about $15,000 a month. I have prostate cancer."

  • Pam Holt, of Indiana, who has taken on $10,000 in debt to stay alive and afford her prescriptions since her 2012 cancer diagnosis.

The pharmaceutical lobby spent $25 million last year and continues to oppose the CREATES Act despite calls from FDA Commissioner Scott Gottlieb, FreedomWorks, and the Heritage Foundation to pass the bill.

A new national poll shows that Americans across the political spectrum want Congress to make lower drug prices a top priority, and voters support passage of the CREATES Act by an 83 to 9 margin. According to a survey from the Republican-led research firm GS Strategies, 85 percent of voters nationwide say lowering the cost of prescription drugs should be a leading priority for Congress compared to just 12 percent who consider it a low priority.

Patients For Affordable Drugs NOW aims to act as a counterbalance to drug corporation influence and conducts on-the-ground advocacy in support of candidates and policies to curb drug prices. It does not accept funding from any organizations that profit from the development or distribution of prescription drugs.

###

Patients For Affordable Drugs NOW endorses Maryland Drug Pricing Bill

ANNAPOLIS, MD — Maryland is taking a strong stand on drug prices today with the introduction of SB1023, legislation to establish a drug cost commission and ensure Maryland residents pay fair prices for prescriptions. The legislation is strongly endorsed by Patients For Affordable Drugs NOW, a bipartisan national patient organization focused on policies to lower drug prices. Patients For Affordable Drugs NOW announced plans to educate, activate, and mobilize Maryland patients in support of the bill.
 
“The Maryland residents we hear from are tired of drug corporations raising prices without regard to the harm to patients and consumers,” said David Mitchell, a cancer patient and Maryland resident whose drugs cost $450,000 per year and the Founder of Patients For Affordable Drugs NOW. “The legislation introduced today would be a serious step forward toward helping millions of Marylanders by keeping drugs affordable. I urge the legislature to move quickly and enact this critical measure.”
 
P4ADNOW has collected hundreds of stories from the Appalachians to the Chesapeake Bay. The organization will create online tools that help patients contact elected officials in support of the bill, and it will amplify the voices of Maryland residents struggling under high drug prices to make elected officials see the heavy toll of high-priced drugs.
 
Among those residents is John Darby, 48, a married father of two with a rare blood cancer. For a decade, he’s relied on a daily injection to manage his illness. Its price is $5,200 per month.
 
“This is the only medication available at this time that keeps him healthy enough to work, be a father and stay alive,” said Helen Darby, his wife.

The bill would:

  • Establish a commission that will catalogue rate hikes above a certain threshold.
  • Create a review process to determine whether or not these hikes were excessive.
  • Require bad actors to reimburse taxpayers for unjustified tax hikes.

A partner bill, HB1194, is expected to be introduced March 6.
 
Patients For Affordable Drugs NOW does not accept donations from organizations that profit from the development or distribution of prescription drugs.

###

Patients For Affordable Drugs NOW Endorses Washington Drug Price Transparency Measure

Patients For Affordable Drugs NOW Endorses Washington Drug Price Transparency Measure Washington patient: “I haven’t taken insulin in over a month because of the cost of the drug.”

OLYMPIA, WA — Today’s state Senate hearing on the drug pricing transparency measure HB1541 brings Washingtonians one step closer to lowering drug prices. Patients For Affordable Drugs NOW, a bipartisan national patient organization advocating for policies to lower drug prices, announced it’s strong support for the legislation and said it will take action to push for passage.

“Washington patients tell us devastating stories of skipping doses, cutting pills in half, and going into bankruptcy due to the skyrocketing price of prescription drugs. That’s why this bill is so important,” said David Mitchell, a cancer patient whose drugs cost $450,000 last year and the founder of Patients For Affordable Drugs NOW.

One of those patients is Vancouver resident, Carolyn Wilson. The retired radiology instructor will testify in the Monday morning hearing about the struggles she and her children have faced affording prescription drugs.

“I used to be a Radiology instructor. I’d watch patients come in with swollen arms and legs due to not taking their insulin,” she said in planned testimony “Now, I’m scared that will happen to me. I haven’t taken insulin in over a month because of the cost of the drug.

Wilson will testify about the transparency measure at a public hearing 10 a.m. Monday in Senate Hearing Room 1, in the John A. Cherberg Building, 304 15th Avenue SW.

The bipartisan bill would shed much-needed light on drug prices by requiring drug corporations to justify price hikes to state officials and residents. If passed, drug corporations won’t be able to blindside Washingtonians with arbitrary price hikes.

Without this information consumers and policymakers are at a disadvantage in the ability to engage in real discussions aimed at achieving more sustainable pricing. This move towards transparency can help further discussions about how we address prices in the long term.

Patients For Affordable Drugs NOW is a bipartisan advocacy organization focused exclusively on policies to lower drug prices. To maintain its independence, the group does not accept funding  from organizations that profit from the development or distribution of prescription drugs.

For Washington patient interviews or a copy of the testimony, contact Juliana Keeping juliana@patientsforafforedabledrugs.org

###

Muskego woman paying $20,000 a month for medication fighting to lower drug prices

WTMJ-TV Milwaukee  // February 7, 2018

KEY POINTS

  • "A Muskego, WI woman with blood cancer is fighting to lower prescription drug prices as she's forced to pay almost $20,000 out of pocket for the drug keeping her alive."
  • "She just got back from meeting with Speaker Paul Ryan's staff in Washington D.C.  She wants the speaker to co-sponsor the CREATES Act, a bipartisan bill that would stop brand pharmaceutical companies from blocking generic competitors."

FULL TEXT:

MUSKEGO — A Muskego woman is fighting to lower prescription drug prices as she's forced to pay almost $20,000 out of pocket for the drug keeping her alive.

Patients for Affordable Drugs is a group fighting to change the prescription drug pricing system. Jackie Trapp jumped on board when she learned she had five years to live, and the drug needed to keep her alive would cost her her life's savings.
 
Trapp was diagnosed with Multiple Myeloma, a blood plasma cancer, in 2015. 

"What happens is, I over produce one type of monoclonal antibody leaving me kind of short on the other three that you're supposed to have," Trapp said.
The cancer is terminal but treatable.  After the diagnosis, she underwent induction chemotherapy and then Trapp had a bone marrow transplant.  After that, she was put on a drug called Revlimid.
 
"The first bill was over $12,000.  It was just like another gigantic punch in the gut," Trapp.
 
Trapp said she's always been over-insured and planned for worst case scenario situations.  However, nothing prepared her for the cost of the drug she needs to keep her alive.

"$21,197 is what my Revlimid costs every month," Trapp said.

She's paying more than $19,000 out of pocket a year for the drug.

"I have a love-hate relationship with it. It keeps me alive, but at the same time, it's kind of sucking the life out of me."

She just got back from meeting with Speaker Paul Ryan's staff in Washington D.C.  She wants the speaker to co-sponsor the CREATES Act (Creating and Restoring Equal Access to Equivalent Samples), a bipartisan bill that would stop brand pharmaceutical companies from blocking generic competitors.
 
"It forces Celgene, the company in charge of this medication, to share with the generic manufacturers," Trapp said.

Speaker Paul Ryan's office said: "A member of the Congressman’s staff recently met with Ms. Trapp, and her concerns have been relayed to Congressman Ryan.  Although the bill is pending in committee at this time, be assured that the opinions she expressed will be kept in mind as this issue continues to be reviewed by Congress."