My feedback on health reform

[Guest guest]

I too have joined the ACOR Town Hall list that is concerned with reform of the healthcare system. It is important that you give input now so when reforms take place you have let your concerns be known. We have the opportunity to do that now. Do not waste this chance to speak out and be heard.

Below is my introductory email:

I am Kathy Meade, a widow of Bill, who died in 1998 after living with prostate and lung cancer. After his death I became involved in cancer advocacy with an emphasis on prostate cancer. I have written an E-newsletter to educate people about prostate cancer while employed at Zero, formerly the National Prostate Cancer Coalition. I am a member of the founding boards of the Virginia Prostate Cancer Coalition (VPCC) and the National Alliance of State Prostate Cancer Coalitions (NASPCC). I sit on the legislative advocacy committee for each group. I am also involved with the CCC group in Virginia where I participate in the survivorship committee. I also have an interest in cancer research.

I have a long list of things that we need as part of any new health programs.

1. People need to have access to physicians and coverage for regular physicals and then for treatment for diseases that are diagnosed. There are many people in the US who do not have coverage for even basic services. This leads to late diagnosis for serious diseases that ultimately cause us as a society to pay more for their treatment since treating at a later stage is significantly more expensive. I know of an example of a man who had a high PSA but was unable to afford a biopsy, also men in their 40's or 50's who are diagnosed with late stage disease because their doctors don't do screening tests.

2. Medicare reform must continue and they should be looking at regulations so that they are cost effective. I have a friend in the hospital now for wound treatment. He could be treated at home with a home health nurse according to his physician, but in order to get coverage under Medicare he has to be in the hospital. He got a Mersa staff infection while in the hospital that caused the original problem with the wound. When Bill was at late stage we had a similar situation. To prepare for a outpatient procedure he had to be weaned off Coumadin. To do that he has to have a daily injection of heparin. The doctor was willing to do it on an outpatient basis but in order to be reimbursed by Medicare he had to be hospitalized for 3 days. Rather than just looking at what can be cut, they should be evaluating what can be done on a less expensive basis and how home health nurses can be used more regularly when appropriate.

3. The medical system, when it treats cancer should treat the whole person.

We all have heard about impotency as a side effect for prostate cancer.

Doctors have developed penile rehabilitation programs but the medications or devices used for these programs are not being reimbursed by many insurance companies, including Medicare. I have recently even heard of an insurance rejection for a penile implant. If we pay for breast reconstruction, which is a good thing, we should be doing the same for individuals with other cancers. The IOM produced reports on treating the whole patient at http://www.iom.edu/CMS/28312/4931.aspx This issues raised in this report must be addressed and covered under any reforms of the healthcare system.

4. Reform of the cancer research system must be emphasized. Translational research is vital so that research is focused on research is done that translates into research that will benefit the patient in the physicians office. We need to look at how clinical trials are designed so that they get the information that we really need and so that it is done in a manner that is most efficient. We must be able to think outside the box rather than forced into a model that has been used for a very long time. e Piccart said in a recent article reporting at the San Breast Cancer Symposium, "Piccart feels that we must incorporate the latest understandings from basic science into clinical trials. "If we don't pay attention to the development of robust diagnostics, we will not get to the goal of personalized therapy," she says. To do this would require a new level of regulatory control over diagnostics, both here and in Europe, so that they can be rigorously validated. It requires a great deal of what is known as "correlative" science: co-developing predictive biomarkers along with the new drugs, which will help to select responders and "enrich" clinical trials, making them much smaller, less costly and more clinically meaningful. Tissue collection and analysis must be a part of clinical trials of the 21st century, Piccart insists. "Clinical trials should have a translational component," she says. "If they don't, they are outdated-even unethical."http://tinyurl.com/6ktsgs

5. We need more transparency at NIH, NCI, and CDC so that money that is appropriated for a specific purpose is clearly spent on that issue. I have been trying to identify what CDC spends the appropriations they get for prostate cancer but I have been unable to get an understandable explanation.

We also need to look at efficiencies in these organizations so that their focus is on what is best for people suffering from disease.

6. FDA needs to be evaluated for efficiencies. Their computer system must be pushed forward as quickly as possible. They need to look at the organization in order to minimize politics within the FDA. They need to work with companies in a manner that has complete transparency and works toward efficiency in the development of new drugs and treatments for disease in as safe a way as possible.

7. As cost cutting systems are discussed efficacy should not be the only factor considered. QOL is important and should be a factor. Also the system should not be so rigid that the good of the individual gets lost by making the practice of medicine too "cookbook". A treatment that benefits one person, may not benefit another person. The doctor must have the flexibility to tailor the treatment to the individual. To make this more efficient we need to continue to work toward personalized medicine. In the clinicians office he/she must be able to use all the tools possible to help the patients who so desperately need them.

Kathy Meade