WASHINGTON, DC – Patients for Affordable Drugs launched a national campaign today to demand pharmaceutical giant Novartis price its new cancer drug fairly and in accordance with the fact that American taxpayers invested over $200 million to help discover the drug. In a letter to the CEO of Novartis, Patients For Affordable Drugs requested a meeting to discuss the upcoming pricing announcement of CAR-T, an important new treatment that could cure certain cancers and has the potential to be one of the most expensive drugs ever sold.

“I urge you in the strongest possible terms to price your CAR-T drug fairly in light of the fact that U.S. taxpayers invested hundreds of millions of dollars to develop CAR-T before your company became seriously involved,” David Mitchell, President of Patients For Affordable Drugs, wrote in the letter.

Over the last two decades, American taxpayers spent more than $200 million in the basic and translational science behind CAR-T treatment. Novartis did not contribute significant resources until 2012, when taxpayer-funded research had already revealed the promise of CAR-T. It was only then that Novartis paid $20 million for the exclusive global rights to CTL-019, a specific version of CAR-T therapy.

As part of the campaign to encourage Novartis to establish a fair price for this treatment, Patients For Affordable Drugs will:

• Send a letter directly to the CEO of Novartis outlining the investment made by American taxpayers.
• Circulate a national patient petition in support of fair pricing for CAR-T.
• Launch a national digital ad campaign aimed at mobilizing cancer patients in the fight.
• Produce social media tiles calling for fair pricing.
• Work to arrange a meeting with Novartis to discuss the price of CAR-T treatment in the United States.
• Educate policymakers on the issue to encourage federal and state action for fair pricing for this and other drugs developed directly with taxpayer dollars.

Novartis’ CAR-T treatment is expected to be approved by the Food and Drug Administration in October for treatment of one or more forms of leukemia. It works by genetically reprogramming a patient’s own white blood cells to kill cancer.

Patients For Affordable Drugs is the only national patient organization focused exclusively on policies to lower prescription drug prices. It works to amplify the voices of Americans struggling under crushing drug prices to make policymakers and elected officials see the heavy toll of high priced drugs and take action. Patients for Affordable Drugs does not accept contributions from any organizations that profit from the development or distribution of prescription drugs.

Full text of the letter is below.

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August 17, 2017

Mr. Joseph Jimenez, CEO
Novartis Global
Klybeckstrasse 141
CH-4057 Basel
Switzerland

Dear Mr. Jimenez,

Congratulations on the advisory committee’s recent vote to recommend FDA approval of Novartis’ CAR-T therapy, CTL-019. I have an incurable blood cancer, and I know that many people with cancer look forward with great hope to the potential of your new drug. But drugs don’t work if patients can’t afford them. I write today to urge you in the strongest possible terms to price your CAR-T drug fairly in light of the fact that U.S. taxpayers invested hundreds of millions of dollars to develop CAR-T before your company became seriously involved.

U.S. taxpayers invested more than $200 million in the science of CAR-T treatment starting as far back as 1993 when there was no guarantee that the research would be successful. Only after research conducted with taxpayer funding demonstrated the enormous promise of CAR-T did your company act to capitalize on the science. In 2012, after nearly two decades of taxpayer investment in CAR-T, Novartis paid $20 million for the worldwide exclusive rights to CTL-019. We recognize the company made additional investments, but those investments came after the US taxpayer bore costs during the riskiest development phases.

You are standing on the shoulders of taxpayers, and we believe that should be an important factor in the pricing of this treatment. The price should be fair and take into account the contribution that American citizens already made to the basic and translational science behind CAR-T therapy.

I would like to meet with you to discuss an approach to fair pricing, which could take different forms, such as:

• Holding your price in the United States to the average of prices you receive in six other wealthy nations.
• Accepting a value price as established by an independent organization such as the Institute for Clinical and Economic Review (ICER), discounted to reflect American taxpayers’ contributions and assumption of risk.

I would appreciate the opportunity to discuss these issues with you prior to the determination of CAR-T pricing. It can be an opportunity for Novartis to demonstrate a responsible approach in light of skyrocketing prices for new drug therapies.

I would be joined by Steven Pearson, M.D., M.Sc., Founder and President of the Institute for Clinical and Economic Review, and Aaron Kesselheim, M.D., J.D., M.P.H., associate professor and head of the Program On Regulation, Therapeutics, And Law at Brigham and Women’s Hospital/Harvard Medical School, who have kindly agreed to advise in these discussions.

I send this letter after receiving five hours of drug infusion to hold my cancer in check. I hope that one day soon other patients may be able to derive similar benefits from CAR-T therapy. But in my role as President of Patients For Affordable Drugs, I hear every day from patients who are forced to choose between a drug they need and their groceries or rent. These are unfair choices, especially given the substantial investment U.S. taxpayers already made into CAR-T.

We look forward to your response.

Sincerely,

David Mitchell
Co-Founder and President, Patients For Affordable Drugs

Additional patients signing in support:

Paul Kleutghen
Patient, Primary Plasma Cell Leukemia
Southport, NC

Robert Fowler
Patient, Multiple Myeloma
North Ridgeville, OH

Cc:

Fabrice Chouraqui and Thomas Kendris
Novartis Headquarters Attn: Corporate Contact

Aaron Kesselheim, MD, J.D., M.P.H.

Steven Pearson, M.D., M.Sc.

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