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"I have made an appointment for you with an oncologist."
Ten years ago, my doctor called to explain that a blood test had suggested multiple myeloma, an incurable blood cancer. My reaction was denial. “I'm a runner," I protested, "and runners have strange blood test results all the time."
Now, 10 years later and 72 years old, I am still in denial. Certainly, I do have the incurable myeloma, with its perverse penchant for shattering bones and demolishing organs, but I deny that it will be the end of me. That hope comes largely from a little pill that I have taken once a day for the past 5 years, a drug called pomalidomide, one of many new, innovative, and targeted oral drugs for cancer and other diseases. It hasn’t cured my cancer, but it has kept it stable at a safe level.
Because pomalidomide is just a pill, I am free to take it with me wherever I go. I live my life almost as if there were no cancer, without frequent clinic visits for intravenous (IV) infusions of chemotherapy and, in my case, without disabling side effects. Indeed, the freedom afforded by this drug has allowed my family and me to run 72 marathons since my diagnosis, including one in each of the 50 states, a goal I completed in December at age 71.
But oral drugs have a major drawback.
With our current insurance system, we patients have to dig deeper into our pockets to pay for oral drugs because they are not reimbursed at the same level as a needle in the arm. Insurance companies pay for IV and injectable drugs under a patient’s medical benefit, because the drugs are administered in a hospital or clinic. The patient usually has only a modest copay, even though the drug and the cost of administering it may be very expensive. In contrast, oral drugs are normally covered under a policy’s prescription benefit, with copays that can be as high as $50,000 per year according to the Patients Equal Access Coalition. I’m lucky. I have received pomalidomide at no cost, as part of a clinical trial. But, for many patients, that copay means the preferred oral drug is out of reach, inaccessible, even though it may be the most effective, life-saving treatment and may also offer the highest quality of life.
Some people beat up the drug companies about these prices, but I myself do not fault them for charging a high price for their novel inventions. The possibility of a healthy profit is their inducement to take on the formidable upfront cost and high risk of developing a new drug and receiving FDA approval. Without that prospect, we would never get the drugs. Besides, IV drugs, even with similar costs, have better levels of reimbursement. It’s not the drugs. It’s the insurance.
Because of this, 23 states and the District of Columbia have now enacted oral drug parity laws, which require insurance plans that do cover IV and injectable therapy to cover oral therapy under terms that are no less favorable. Nine more states are examining the issue. Further, the federal Cancer Drug Coverage Parity Act HR1801 was introduced in the US House of Representatives in late April, to create a national standard.
When these laws are passed, we will finally have equal access to life-saving drugs, regardless of whether they come in a capsule, a bottle, or a syringe, and patients will be free to take the drug that offers them the best chance to survive, and perhaps to thrive.
I stand at the start line of another marathon, a little choked up perhaps, thinking of the 15 friends, my friends, who have died from myeloma. I know how lucky I am to be receiving the drug that seems perfect for me. I think of my family. If I had to make the enormous copay just because my drug is a pill, that would mean spending my retirement money on health care-money I had set aside for my family. What a terrible position to be in.
Instead, I got to give my father a misty-eyed hug when he recently celebrated his 100th birthday. I got to take my wife of 50 years and my disabled daughter with me on my races around the country. They have run in 50 states, too, so access to the drug has not only granted me the chance for an exuberant life, but has done just the same for them.
One myeloma doctor has said that the cure for myeloma is to live long enough to die of something else. That’s my plan, made feasible by access to the treatments that work best for me. I deny that the cancer will finish me, and I don’t want a quirk in our insurance rules to deny me the chance to survive.
Don Wright is a marathoner, cancer survivor, lawyer, computer consultant, engineer, and writer. He runs to raise awareness for the charity Team Continuum, see http://facebook.com/eracecancer .