By MYRNA ULFIK
I have been battling non-Hodgkin’s lymphoma, an incurable blood cancer, for the past nine years. Last year, I was also diagnosed with uterine cancer.
I didn’t run to Canada for treatment. Medicare took care of my needs right here in New York City. To endure, I just need the freedom to choose my insurance, my doctors, and get the diagnostic scans and care I need. And one more thing: I need hope that a treatment will be developed that can control my diseases the way insulin controls diabetes.
Every cancer patient needs these things, especially hope. But the government’s plan to reform the health-care system in this country threatens all of this—particularly the development of new treatments.
When I was first diagnosed in 2000 I had chemotherapy. It put me in remission, but nearly killed me.
Three years later the lymphoma was back and I faced more chemo. This is so often the pattern of cancer: recurring disease and repeated chemo. In the end patients often die not from the disease, but from the treatments.
I took a different path, seeking a cancer vaccine. One had been developed at Stanford University 12 years earlier that had given 90% of patients very long remissions and cured some entirely. Unlike chemotherapy, there were no severe side effects.
But I couldn’t get the vaccine because the Food and Drug Administration required another trial that would take nine more years. Over-regulation has kept this treatment from patients for 21 years, as some 24,000 lymphoma patients died each year.
My husband and I searched the Internet and found another vaccine being tested at Freiburg University in Germany. That vaccine has helped me avoid chemotherapy for years. My oncologist says he’s never seen another patient do so well with the type of lymphoma I have.
I am still here because my care was managed by doctors—not a government agency. My doctors do what the bureaucracy can’t: They see me as a human being.
Patient-as-person will be a lost concept under the new health-care plan, where treatments will be based not upon individual patient needs, but upon what’s best for everyone. So cancer drugs for seniors might take second place to jungle gyms and farmers’ markets—so-called preventive care—which are covered under both the House and Senate versions of the health bill.
The stimulus package passed earlier this year allocated $1.1 billion for hundreds of “Comparative Effectiveness Research” studies. This project will compare all treatment options for a host of diseases in order to develop a database to guide doctors’ decisions. Research of this sort typically takes years. But the data will likely be hastily drawn conclusions that reflect the view of the government agencies that fund the studies: Cheap therapies are just as good as expensive ones.
In order to finance health-care reform, Democrats in Congress have proposed cutting $500 billion from Medicare over the next 10 years. Yet in his press conference last Wednesday, President Barack Obama denied that Medicare benefits would be cut. He has surrounded himself with advisers who believe otherwise.
Tom Daschle, Mr. Obama’s original pick to head Health and Human Services, argues in his book “Critical: What We Can Do About the Health-Care Crisis,” that we should accept “hopeless diagnoses” and “forgo experimental treatments.” Mr. Daschle blames the “use and overuse of new technologies and treatments” for runaway health-care costs. He suggests a Federal Health Board modeled after the British “NICE” board to make decisions on health-care rationing.
But the British system is infamous for denying state-of-the-art drugs to cancer patients. Thus cancer-survival rates in Britain are far below those in America, just as they are in Canada.
Canadian cancer patients told to wait months for treatment and diagnostic scans frequently go south and pay out-of-pocket for care in the United States. A number of Quebeckers even sued their government for violating their “right to life and security” under the Quebec Charter of Rights and Freedoms. Canada’s Supreme Court has acknowledged the pervasive rationing that occurs. In the 2005 case Chaoulli v. Quebec (Attorney General) , the majority opinion stated: “The evidence in this case shows that delays in the public health care system are widespread, and that, in some serious cases, patients die as a result of waiting lists for public health care.”
Despite such evidence, the Obama plan is likely to target various treatments—including radiology scans—in order to cut costs. I survived this long because my radiologist examines each of my scans with me in detail.
One of those scans also saved my life by picking up unsuspected uterine cancer. The congressional majority seems blissfully unaware that all cancer patients need those scans to monitor their diseases.
Also uneasy with the cost of medical progress is Dr. David Blumenthal, Mr. Obama’s new head of Health Information Technology. It is not reassuring that he stresses that two-thirds of the annual increases in health spending result from medical innovation, as he has written in The New England Journal of Medicine.
Cancer patients need nothing more than such innovation. Yes, developing more effective, less toxic treatments is expensive. The prices of new cancer therapies reflect the billion-dollar cost of developing each new drug. But such treatments can be life-saving, as they have been for me.
Despite its warts, our system works. Carelessly tinkering with it will have a world-wide penalty—the stifling of new drug development. What company would spend a billion dollars to develop a drug that will not be reimbursed by the new health plan? This would be a direct, devastating blow to the most vulnerable Americans.
In spite of the president’s assurances, there is every sign that this plan will be financed by deep cuts to Medicare, which, like the public option, will limit payments for specialists, radiology scans, and cutting-edge cancer drugs. These are prime targets because they are more expensive than other services. But are we really expected to forgo new medical technology and return to the cancer care of the 1970s?
When members of Congress are asked if they will opt for the public plan, they say no. That’s for the rest of us.
The number of Americans who have cancer exceeds 10 million. It’s time for cancer patients and their families to remind those on Capitol Hill that health-care reform is a matter of life and death for us.
Ms. Ulfik is a writer in New York.
