Government Reform and Oversight Committee

February 4, 1998
Ms. Ann E. Fonfa

When a person is diagnosed with cancer her immediate desire is to be given the treatment that will cure it. We want to rely on our doctors for the answer. I know because I was diagnosed with breast cancer in January of 1993 at the age of 45. I found a lump during my monthly breast self-exam, just two months after a clinical exam by my doctor.

We don't have any answers for cancer. If we were doing well with conventional treatments, cancer mortality rates would surely have fallen dramatically. And 50% of all women diagnosed with breast cancer would not be dead in 15 years. I recently attended the XVth annual symposium of the Chemotherapy Foundation. Many of the speakers mentioned the moderate gains now being achieved through the use of chemotherapy. Unfortunately survival time does not seem to be impacted by any new developments in drug usuage. And if survival has not improved, then surely we must look in other directions.

In past years, the American Cancer Society would place a non-conventional treatment on the Unproven Methods list, and that was the kiss of death. No research funds would be received once an idea was trashed this way. So instead of examining new . parameters, they were written off almost immediately. Now this may be great for keeping the system running neatly but it sure has been lousy for a person with cancer. The fact that natural treatments usually are not owned or promoted by any company has probably limited development. NCI should take charge and design appropriate clinical trials to move their investigation forward rapidly.

Interestingly, treatments that were classified as unproven have lately been re-examined and removed from the list, i.e. hyperthermia. It is my belief that the impetus to explore alternatives comes from the consumer movement. The Chemoprevention branch of NCI now has a mandate is to explore many natural substances used in these modalities.

As a patient and advocate, I often wonder how to approach a conventional physician with my non-toxic protocols. Last year, after extensive research and discussions with several scientists (Dr. Zachrau, Dr. Issels) and my physician in Mexico, I began using high dose Vitamin A and Vitamin E in liquid form. I started this on March 1, 1996. By the 22nd 1 observed a decrease in the tumor. Over the next week, it continued to reduce in size. When I went to my oncologist to show him, he said HI don't remember what the tumor used to look like". I could understand that but what was so enraging was that he exited the room almost immediately thereafter. He never touched the lump, he didn't even measure it, he barely looked at it. Surely a concerned, interested open-minded clinician would want to rejoice along with his patient at such a result. Especially since the Chemoprevention branch has been looking into the use of Vitamin A known as retinoids, and researchers are currently using it to treat cancers.

It is five years since I began researching alternative/complementary cancer therapies. Did I find a single magic bullet? No, but then I no longer believe in that concept. I think each patient may find something that is right for them. I wish there were tests devised to tell us who might benefit from which treatment, including the conventional ones. In fact, I deplore the idea that we cannot distinguish the patients for whom chemotherapy is effective from those who are simply harming their bodies with no gain. This is an area our tax dollars should pay to explore. After all most cancer patients are given the conventional treatments and many still die.

Many people with cancer call me for information and advice. I tell them I am not a doctor and I don't have any answers. But what I do know about are possibilities. And there are many. Only if we know what is available is the concept of informed choice fully functioning. Materials should be in every surgeon and oncologists office so that patients have immediate access to choices in treatment.

Yes, in some cases when a patient is deemed terminal, the doctor will not object if the family comes up with something to try that is out of the norm. But rarely will they know enough about the possibilities to offer advice. It is almost as if they are wearing blinders. No matter how many patients die of their disease, the physician has no personal responsibility to explore the options.

An additional torment is the insurance question. We may seek and try several options. They are almost always less expensive than conventional treatments but receive not a penny in coverage. I personally spent $27,000 on a five week trip to a clinic in Mexico. My insurance company would not even cover the blood tests I received, nor did they pay to have a catheter inserted so that I could have certain treatments. When I returned to New York, the surgery to remove the catheter was fully covered. Comparing the costs, I noticed that a one hour and 15 minute surgery in New York cost me $7000. Four hours of surgery would have cost as much as the five week stay which I credit with helping me regain control of my health. Of course the surgery would have been fully covered. Another aspect that is rarely addressed is that fact that many oncologists prescribe drugs in what is called an "off-label" use. This means they follow hunches and not accepted protocol. If they are willing to do this with chemotherapy drugs, why not expand the horizons to allow use of non-toxic treatments? Although few medical schools offer coursework on nutritional issues, complementary or natural medicine, continuing education courses are now available. Of course, there is not much money to be made from natural substances.

Why haven't we heard about treatments that are used in other countries? Germany uses herbs and homeopathy as does France. In China, cancer treatments normally combine herbs with the standard protocol, while Japan has pioneered the use of medicinal mushrooms. American doctors need to expanded their vision. People with cancer and their families are looking for doctors who will respond to questions about alternative and complementary treatments. We will no longer accept uninformed responses. Our lives are at stake and we need access to all medical options.