Cancer therapies have made a great deal of progress in recent years, but access to this progress is at risk. Cancer patients are often told that treatments giving them a few more weeks aren’t worth it. But increasingly, living even two weeks longer can mean a fuller and potentially even a longer life. New medicines that target specific tumors not only improve well-being, but also give people the chance to try a series of new treatments that can allow people to become cancer free.
MY LIFE IS WORTH IT is an online campaign created to fight for patients because they want, need and deserve to be included in discussions linking cost issues to their care.
Discussions of the price of care, especially recent concerns about the cost of therapeutics, need to take into account the value to the patient and to society in less costly hospitalizations and physician care and increased productivity. Factors such as median survival don’t reflect what it means for a person with cancer to live more productive years and talk of health costs are “bankrupting” America miss the point that innovation saves money and saves lives.
MY LIFE IS WORTH IT, organized with the support of not-for-profit organizations, advocacy groups and patients, was launched at the ASCO cancer meeting May 30, 2014. MY LIFE IS WORTH IT is supported by the Center for Medicine in the Public Interest (CMPI), a not-for-profit organization.
The founders are Bob Tufts, former major league baseball player who now teaches at 3 universities in NY and who is himself a cancer (myeloma) patient, and Robert Goldberg, Ph.D. of CMPI.
Bob Tufts is frustrated, perhaps even angry, reading conference agendas discussing the cost of cancer therapies when they don’t have a single patient at the table. He says patients want a doctor in a white coat, not a green accountant’s eye shade.
Bob Goldberg who is involved with patient economic issues through CMPI was inspired by a pancreatic cancer patient he met last year named Lynne Jacoby. If she had listened to her doctor when she was diagnosed, she would have put her affairs in order and given-in quietly to the cancer. Instead, she enrolled in a clinical trial and lived a full year and a half longer than doctors expected. Bob wonders if she might have lived longer if doctors had moved ahead with a scan of her genome. But instead of discussing the medical potential, the discussion focused on the cost and who would pay.
Initially, a petition will go to the House Committee on Energy and Commerce. The committee has launched the Cures Initiative “that aims to accelerate the pace of cures and medical breakthroughs in the United States – to determine what steps we can take to ensure we are taking full advantage of the advances this country has made in science and technology and use these resources to keep America as the innovation capital of the world.”
MY LIFE IS WORTH IT wants Congress to work with health plans to eliminate the “redlining” of cancer patients through the use of limited networks, restrictive formularies, clinical pathways and higher co-insurance for specialty cancer drugs. We would also encourage Congress to pass legislation requiring parity between oral, injectable and infused treatments for cancer.