California Patient Testimony Exposes Big Pharma Tactics that Keep Drug Prices High

SACRAMENTO — A California grandmother plans to stand up to Big Pharma at a state senate hearing Wednesday, sharing her story about unaffordable prescription drugs and speaking in favor of AB 824 — a first-in-nation bill that would end a drug company tactic used to block lower-priced generic competition.

Karen Macedon, a Sacramento waitress who lives with asthma and type 2 diabetes, will tell the Senate Health Committee, “Not a day goes by when I don’t think about the impact these conditions have on my life and the growing burden of paying for the medications that treat them.”

Karen’s diabetes medication costs more than $800 a month. There is no generic option.

AB 824, legislation introduced by Assemblymember Jim Wood (D-Santa Rosa) and sponsored by state Attorney General Xavier Becerra, would make illegal a Big Pharma scheme called “pay-for-delay,” in which a brand drug maker pays a generic manufacturer not to bring a competitive product to market, driving big drug company profits and hurting patients waiting for less-expensive prescription drugs.

Macedon’s testimony will be delivered on Wednesday, July 3 before the Senate Health Committee at 1:30 PM.

Key points from Karen Macedon’s prepared remarks:

• “To help manage my diabetes, my doctor prescribed a drug called Bydureon….I can’t afford it. So I’m forced to rely on samples from my doctor. I am grateful for these samples, but I know I cannot depend on them forever. And I’m terrified for the day when they’ll run out.”
• “And Pay-For-Delay deals — like the one my drug’s manufacturer has entered into before — are driving up costs by holding back generics from the market. This committee can change that.”
• “I urge you to vote YES for this bill…drugs don’t work if people can’t afford them.

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If this country can produce a Cheetos chicken sandwich, it can lower drug prices.
 
1. Biosimilar Warfare

• Biosimilar drugs were posed to change the lives of patients and save the country billions. But patients like Charles Pope feel their health ‘disintegrating’ waiting for less-expensive biologics. — (Associated Press)

2. ‘Evil’

• Sneaky pharma tactics are keeping lifesaving generic drugs out of reach for patients who need them most. California is taking a stand. — (Los Angeles Times)

3. The Price We’ll Pay

• As we enter a period of rapid medical breakthroughs, prices are becoming totally unsustainable. — (The Hill)

4. Dirigo!

• Maine is the latest state to tackle drug pricing head on. The state overwhelmingly passed a package of bills aimed at lowering costs for patients. Go Maine! — (Press Herald)

5. ? Issue Alert

• Running for president? Lower drug prices. — (STAT)

WASHINGTON, D.C. — In response to today’s HELP Committee vote to include the FAIR Drug Pricing Act in the Lower Health Care Costs Act of 2019, Patients For Affordable Drugs Now Executive Director Ben Wakana issued the following statement:

“If drug corporations want to gouge patients, the public deserves to know exactly why. Accountability and transparency are the principles driving the FAIR Drug Pricing Act, a common sense, bipartisan reform.

“We thank Chairman Alexander and Ranking Member Murray for leading a robust and productive debate on the Lower Health Care Costs Act. And we applaud Senators Baldwin, Braun, Smith, and Murkowski for their relentless efforts to shepherd this critical bill through the process. We hope this bill will be passed by the full Senate expeditiously.”

BACKGROUND

The FAIR Drug Pricing Act requires transparency from drug manufacturers that increase a drug price by more than 10 percent over 1 year or 25 percent over 3 years.

After a corresponding price hike, drug manufacturers must submit a report to the Department of Health and Human Services that includes:

• The percentage by which the drug price will be increased
• Justification for the price increase
• Current price of drug and a history of all price increases since the drug was approved by the FDA
• List of all manufacturer expenditures for:
  • Materials, manufacturing, and patents/licensing
  • Research and development
  • Percent of funds spent on research and development that came from federal coffers
  • Total revenue and net profit reaped from the drug’s sale for each year since its FDA approval
  • Total marketing and advertising costs for the drug

The bill is led by Senators Baldwin (D-WI), Braun (R-IN), Murkowski (R-AK), and Smith (D-MN).

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What do Navy UFO sightings and drugs prices have in common? They are both out of this world!
 
1. Get the Job Done

• So many bipartisan drug pricing proposals, so little time. Congress, get something done. And make it big. — (The New York Times)

2. Couldn’t Have Said It Better Ourselves

• Whiny pharma sued to keep its high drug prices off the tele. To which HHS replied: “If the drug companies are embarrassed by their prices… they should lower them.” — (Bloomberg)

3. How Do You Fight Something You Can’t See?

• By standing up to share your drug pricing story! Check out this patient video by the California Attorney General’s office, in support of legislation that would force Big Pharma’s shadowy, collusive pay-for-delay deals into the light. — (Twitter)

4. Forced to Buy Expired Insulin

• This hardworking Texan living with type 1 diabetes is self-employed and forced to buy expired insulin, putting his health at grave risk. Others are caravanning to Canada to buy a drug as vital to their lives as water. — (P4AD & The Washington Post)

5. Drug Pricing Hurts Women More

• And women are working to solve that issue. Listen to this podcast to learn about the efforts of I-MAK’s Priti Krishtel and Jessica Grossman of Medicines360. — (The Commonwealth Fund)

AUGUSTA, Maine — In response to news that Gov. Janet Mills today signed a series of bills to hold drug corporations accountable for exorbitant price hikes and allow for the safe importation of prescription drugs from Canada, Patients For Affordable Drugs Now Executive Director Ben Wakana issued the following statement:

“This is a victory for Maine patients and taxpayers who are fed up with unrestrained drug prices. We applaud Governor Mills and the legislature for focusing on this issue, and we look forward to additional action next year to continue fixing our broken system and ensuring Mainers have access to lifesaving prescription drugs.”

BACKGROUND

Here’s how the signed legislation will benefit Mainers:

• LD 1162: Requires drug manufacturers to disclose the costs to develop, produce, and market certain drugs, and builds on a law passed last year that requires the Maine Health Data Organization to post the most expensive and commonly prescribed drugs.
• LD 1272: Creates a state-administered program to import wholesale drugs from Canada. Under the program, Mainers are expected to save millions on prescription drugs.
• LD 1504: Increases transparency between manufacturers, PBMs, and consumers. The bill requires that PBMs pass their rebates on to consumers or insurers to lower premiums. Consumers also must be offered the cash price of a drug if it is lower than their copay.
• LD 1499: Creates the Maine Prescription Drug Affordability Board, an independent body with the authority to determine specific prescription drug spending targets based on a 10-year average.

In advance of today’s bill signing, Patients For Affordable Drugs Now published a series of patient stories to underscore the urgency of the drug pricing crisis in Maine. Additionally, four patients testified at an April hearing, patients spoke out in the press, and Mainers were given the tools to contact their legislators in support of the proposed changes.

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WASHINGTON, D.C. — In response to news that the U.S. Department of Health and Human Services’ proposal to lower drug prices in Medicare Part B is under review by the Office of Management and Budget, Patients For Affordable Drugs Now Executive Director Ben Wakana issued the following statement:

“We are emphatic in our support of the proposed International Pricing Index for Medicare Part B. It is a bold step forward to lower drug prices, which patients desperately want and the country needs.

“We hope the Trump Administration will finalize this rule to tackle head-on the fact that Americans pay twice as much for drugs than citizens in other wealthy countries.

“Don’t be fooled by Big Pharma’s spin. There is no evidence the proposed Part B changes would impact patient access to drugs.”

BACKGROUND

• Recent polling shows how voters across the country overwhelmingly favor — by a 71-point margin — bringing Medicare Part B drugs in line with what people in other wealthy nations pay, and eight in 10 voters believe the proposal will result in better care or have no impact on the care they receive.
• “Americans pay anywhere from two to six times more than the rest of the world for brand name prescription drugs.”
• More than 1,500 patient advocates signed a petition urging the administration to move forward with the proposal to lower drug prices in Medicare Part B.
• Patients For Affordable Drugs Now released a TV ad, “Ruth,” about a Florida patient who tells the story of how her family went bankrupt and lost their home due to the price of her Part B drugs. She urges Congress and the Administration to move forward and implement an International Pricing Index. P4ADNow also released a video featuring Mike Gaffney, a resident of Washington state who discussed what the Part B changes would mean for him.
• In April, P4ADNow hosted a congressional briefing featuring a bipartisan panel of experts who agreed that International Reference Pricing can lower drug prices in the U.S. while maintaining innovation.

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Velcro shoes for Father’s Day? Total rip off. Just like drug prices.

Welcome to the Week in Review in prescription drug pricing! 
 
1. The Maine Event

• Lawmakers in Maine moved a slate of drug pricing reforms that involve transparency, Canadian drug importation, and PBM fixes. — (The Times Record)

2. Don’t Mess With Nevada

• Our drug pricing hero and Nevada state Sen. Yvanna Cancela led a first-in-nation effort on insulin pricing transparency. She’s not done yet. — (Twitter)

3. It Will Lower Drug Prices

• The United States pays two to three times more than other developed nations for prescription drugs. Congress should move International Reference Pricing forward on the double. Legislation proposed by Sens. Rick Scott and Josh Hawley is a step in the right direction.  — (Palm Beach Post)

4. Nice Work, Eh?

• Florida Gov. Ron DeSantis signed a Canadian drug importation bill to law. ?? — (AP)

5. Rethinking the Way We Pay

• Sen. Bill Cassidy examines how to tackle extreme prices in medicine’s next frontier. We don’t agree with all of it, but it’s a thoughtful take on gene therapy. — (STAT)

AUGUSTA, Maine — After a series of unanimous votes today, Maine senators advanced legislation that would hold drug corporations accountable for exorbitant price hikes and allow for the safe importation of prescription drugs from Canada. A package of bills aimed at lowering drug prices now moves to the House floor.
 
“Today’s vote shows that Mainers are taking charge in the fight to lower drug prices,” said Ben Wakana, Executive Director of Patients For Affordable Drugs Now. “We applaud consumer groups and the state legislature’s efforts to rein in drug prices, and we are proud patients are standing up against abusive pricing practices.”
 
In advance of today’s votes, Patients For Affordable Drugs Now published a series of patient stories to underscore the urgency of the drug pricing crisis in Maine. Additionally, four patients testified at an April hearing, and Mainers were given the tools to contact their legislators in support of the proposed changes.
 
Here’s how the pending legislation would benefit Mainers:

• LD 1162: Would require drug manufacturers to disclose the costs to develop, produce, and market certain drugs, and would build on a law passed last year that requires the Maine Health Data Organization to post the most expensive and commonly prescribed drugs in Maine.
   
• LD 1272: Would create a state-administered program to import wholesale drugs from Canada, which could then be purchased at a significant discount. Under the program, Mainers would save millions on prescription drugs.
   
• LD 1504: Would implement transparency between manufacturers, PBMs, and consumers. It would require that PBMs pass their rebates on to consumers or insurers to lower premiums. Consumers also must be offered the cash price of a drug if it is lower than their copay. 
   
• LD 1499: Would create the Maine Prescription Drug Affordability Board, an independent body with the authority to determine specific prescription drug spending targets based on a 10-year average.
   

Patient Perspective: 
 
Lori Dumont of Brewer: “My brother suffered ketoacidosis because he could not afford his insulin. Like so many others, his insulin costs were out of control. For both his long term and short term insulin he was paying about $1,500 a month. On a fixed income, high drug prices are literally a matter of life and death.”
 
Sabrina Burbeck of Old Town: “When my youngest son was 18 months old he was diagnosed with Type 1 diabetes. In order to survive, he relies on Humalog Insulin. One vial of Humalog costs $350.”
 
Glenda Smith of Kennebunk: “My Symbicort, Lostatin, Spiriva, and other medications cost me more than $1,200/month, not to mention the $5,000 we have to pay out of pocket before insurance even begins to pay its portion. That is not realistic on our fixed income. My drug costs alone are more than my entire Social Security check.”
 
Christina Raymond of Limestone: “In order to manage my disease, I require several medications –– Lupron, Tamoxifen, and Neulasta –– in addition to my regular chemo treatments. Lupron costs me $1,500 per month and my Neulasta runs $6,000 per shot.”

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