The problem just got worse. For several years, we’ve been reporting progress in making some cancers “chronic conditions.” That means you can live for many years with it—in some cases like with CML leukemia—even living a normal life span. But to do that you may have to take medicine, sometimes several, for years. These are costly, increasingly very costly. Who pays? If you are counting on insurance and laws that protect you, those of us with “chronic” cancer may be headed for the grave—or bankruptcy—sooner rather than later. The latest vote in the U.S. House of Representatives to limit support of Medicaid for lower income people, to allow insurance companies to charge more for older people, and to weaken requirements to insure people with pre-existing conditions is a tremendous further threat. I am worried for me and for you.

Like many people with cancer, I am on Medicare, and I have a prescription drug plan through AARP. “AARP is deeply disappointed in today’s vote by the House to pass this deeply flawed health bill,” said AARP Executive Vice President Nancy LeaMond. “The bill will put an age tax on us, harming millions of American families with health insurance, forcing many to lose coverage or pay thousands of dollars more for health care. In addition, the bill now puts at risk the 25 million older adults with pre-existing conditions, such as cancer and diabetes, who would likely find health care unaffordable or unavailable to them.” 

The medicine I take costs $12,000 a month, and I live pretty well because of it. It’s a breakthrough in oral therapy that inhibits a cancer gene. Our co-pays have ranged from $2,300 in one month to about $630 per month for the rest of the year. Next year, the high cost to me will start again. Because I still work, I do not qualify for the limited co-pay assistance programs. And because I work for a small company, we do not have a group insurance plan—not me—not my younger spouse, Esther.

You may be in a similar situation. Or you may have a job, or your spouse does, with good insurance. But you worry cancer may make employment difficult for you or your caregiver. Or you may worry changes in the law may make company insurance coverage much less supportive. 

The journey with cancer is an uncertain one. Anxiety comes with every scan, with every blood test, every clinic visit. At Patient Power we have consistently, with the help of world experts, brought you messages of hope. Hope for new medicines, hope for a longer life with fewer side effects from the medicines that help. But is there real hope if you can’t pay for it? If the life you had hoped to live is unattainable? 

That is the worry. Uncertainty living with cancer. Uncertainty about affordable access to the treatments you need.

If you are an American, I don’t know where you come out on the U.S. political spectrum. Certainly all of us can see the unfairness of the system now being re-engineered. Of course, what we’ve had is flawed. Yes, it needs improvement. Our friends in other developed countries shake their heads at the trauma American patients go through worrying about coverage to treat illness. The next few months will be telling as the branches of our government haggle over how to help us—or not.

We, as patients and family members now have a choice. Will we be silent on how this affects us? I, for one, will not. I hope you will speak up, too, to your elected officials. Thank them for supporting cancer research but tell them it’s not worth much if patients have little or no affordable access to the breakthrough care that results.

Please write to me at comments@patientpower.info.

As always,

Wishing you and your family the best of health!

Andrew