Reform should focus on patients

John R. Seffrin
Politico
Nov 2, 2009

Roseanne Nabhan of Portage, Ind., was diagnosed with sarcoma in June 2007. The cancer diagnosis came as a shock, but Roseanne knew she had health insurance. What she didn’t know was that her plan included a cap on benefits, including lifesaving radiology treatments. Since her diagnosis, Roseanne has accrued $20,000 in medical debt. She has looked for other insurance, but the few health plans that would accept her cost far more than she and her husband can afford.

Every day, the American Cancer Society hears from scores of people like Roseanne who cannot get the care they need at a cost they can afford. Some have lost their jobs and will soon lose their health insurance. Others have gone deep into debt to pay for care while delaying expensive treatments, cutting recommended doses of medicine and putting household bills aside. Still others have been denied insurance altogether because of pre-existing condition exclusions that apply to cancer.

We must fix the broken health care system for cancer patients and for millions of others with life-threatening chronic diseases, and we must do it this year. For health care reform to work for patients, it must make quality health care affordable for all Americans, guarantee that no one can be denied coverage because of a pre-existing condition, set limits on the amount a patient must pay for in-network and out-of-network care and ensure that leaving or losing a job does not create a gap in health coverage.

Health care reform must place greater emphasis on the role of disease prevention. The current system is focused on treating people when they get sick, but it makes a paltry effort to prevent disease in the first place. Reform must offer health care providers incentives to ensure that doctors and nurses order proven screening tests that prevent cancer and detect it early and counsel patients on adopting healthy behaviors. Reform must also coordinate the prevention efforts of myriad government agencies and launch a national effort to identify evidence-based priorities for prevention.

Reform should motivate people to adopt healthy behaviors and encourage businesses to promote wellness in the workplace. But we must not let employers and insurers penalize people who do not participate in wellness programs or fail to meet specific health goals by making it more difficult or expensive for them to buy health insurance. Health care reform is about making sure that all Americans have adequate coverage, irrespective of health status.

Health care reform must emphasize patient-centered care. No patients want a new system that allows the government to interfere with their health care any more than they want to keep the current rules that enable insurance companies to deny coverage for seemingly arbitrary reasons. Patients should have an informed choice of plans and doctors and be offered pain and symptom management, care planning and other aspects of palliative care that support quality of life.

And they should benefit from science-backed comparisons of which treatment options are most effective in which circumstances. Opponents of reform have used “comparative effectiveness research” as a boogeyman to spread falsehoods about a bureaucratically controlled system. In reality, this research can produce valuable information that empowers patients and their doctors to make informed choices about their care.

Health care reform must also foster innovation and the discovery of new treatments and cures that can benefit more people. America has a great health care system — for those who can afford it. Opponents charge that health care reform will result in rationed care, but we already ration care by pricing tens of millions of people out of the system, and the results are disturbing. Peer-reviewed studies show that the uninsured are more likely than those with insurance to be diagnosed with cancer at its later stages and to die from the disease. And when people are forced into emergency rooms because they cannot otherwise get care, the costs are passed on to those who can.

Health care reform should be about patients like Nabhan, not about politics. Congress should pass legislation that will improve the system for cancer patients and survivors, thereby improving it for millions of others — and save lives.

John R. Seffrin, Ph.D., is CEO of the American Cancer Society Cancer Action Network (ACS CAN).