Can you trust your doctor? That is the question that lies at the heart of the current battle with health care reform in this country. Americans need and deserve to be able to have complete trust in their doctors. Unfortunately, in the case of my wife, Christine Nesmith deMeurers, she could not trust her doctors. In September of 1992, my wife heard the four words, that for many women in this country, are the most frightening in the English language. She was told, "you have breast cancer." As events turned out, however, the news of having cancer was only the first of many fears she had to face. Christy also had to deal with fears inflicted upon her by her health coverage provider, Health Net, the second largest health maintenance organization in the state of California.

As a cancer patient, Christy quickly learned the importance of the doctor/patient relationship. She learned the patients that get well--and get well the fastest, are those who can trust their doctors implicitly and have faith in the treatments their doctors employ. Christy's HMO interfered with the relationship with her doctors not once, but repeatedly, in a most offensive and vile way. The arbitration panel which ultimately heard Christy's complaints against our HMO described Health Net's interference in the sacred doctor/patient relationship as constituting "extreme and outrageous behavior exceeding all bounds usually tolerated in a civilized society."

The arbitration panel that made that judgement was correct. It is now time for our civilized society to stand up and enact new legislation in order to prevent what happened to my wife from reoccurring anywhere again in our great nation.

When Christy was first diagnosed with breast cancer she wanted to learn everything she could about the disease. Christy knew the beginning step in battling cancer was education. She wanted the complete and honest truth from her doctors and from her health maintenance organization. As events progressed, she found that more often than not, she was not given the complete and honest truth.

In spite of doing everything she could to combat the cancer, in May of 1993, it was confirmed Christy's tumors had metastasized from her breast to her bone structure. At that time, Christy's Health Net provided oncologist, Dr. Gupta, recommended a bone marrow transplant. Dr. Gupta personally phoned the City of Hope, a renowned center of excellence with a great deal of experience in bone marrow transplants. In spite of Dr. Gupta's personal referral, the City of Hope refused to have even an initial consultation with Christy once they learned she was insured by Health Net.

Christy and I appealed to Health Net to allow us to at least talk with the City of Hope, but instead, we were given a referral to Scripps Clinic, a medical facility which did not begin to carry the high reputation as did the City of Hope when it came to bone marrow transplants. Christy and I went to Scripps Clinic and met with Dr. McMillian. Dr. McMillan refused to discuss in even the most basic terms as to what was involved in a bone marrow transplant. At that point, Christy and I knew the treatment was an option available to some cancer patients, but we did not know if deMeurers...3 Christy could meet the prerequisites required by the transplant protocol. We did not even know if it was a treatment we wished to seek for Christy, regardless as to whether or not it was a covered benefit, or if she could even qualify to enter the program. We were not given the answers to our questions.

It is my belief the health care professionals at Scripps Clinic were "gagged" from giving us the information we asked for. Health Net, realizing the transplant was extremely expensive, did not want us to know the procedure was even a possibility. It would have been far cheeper for them if Christy had simply gone away and died, never having been educated as to the treatments available to her in her fight against cancer. Most women in that situation would have done precisely that. And health maintenance organizations reap millions in profits each year because people, distraught over learning they are faced with a life-threatening disease, simply give up rather than fight their HMOs.

For Christy and me, going away to die was not an acceptable option. Unhappy with the lack of honest information, we set out to find some answers on our own. Christy and I flew to Denver to meet with Dr. Jones, who is considered by his peers to be at the forefront of breast cancer treatment. There, outside the choking grasp of Health Net, Christy and I were finally able to get the answers we were searching for. Dr. Jones was able to give us details of the procedure. He informed us as to the benefits, while also warning us of the risks. With Dr. Jones we found the level of trust and the honest relationship we had expected from Christy's Health Net provided physicians, and had been denied. Armed with information, Christy and I decided to do an experiment closer to home. In June of 1993, we went to UCLA to confer with Dr. Glaspy about the possibility of having a bone marrow transplant done in Los Angeles. Knowing we had presented our Health Net coverage card to two facilities in California and had been denied access to information at each, Christy and deMeurers...4 I made the conscious decision not to provide our insurance information to UCLA. We wanted to hear the whole and honest truth that any citizen would have gotten. We did not want to risk hearing only the information our managed care givers wanted us to hear. The decision proved very enlightening. I am convinced beyond any shadow of doubt that the encouragement we got from Dr. Glaspy in regard to bone marrow transplants would have been drastically different had he known we had health care coverage through Health Net at the time of the consultation. I remain convinced to this day that Dr. Glaspy would not have encouraged Christy to enter the program as he did, and it is very likely he may have refused to confer with Christy at all had he known we had Health Net coverage.

My family suffered substantially because of "gag rules" and lack of disclosure on the part of the HMO. After we were forced to file a lawsuit against Health Net, Christy was ultimately allowed to go through the transplant procedure at UCLA, but her faith in the system and her trust in Dr. Glaspy had been irrevocably destroyed.

No one will ever know for sure what would have happened had our HMO acted in good faith, but I fully believe my wife's life would have been greatly extended if she could have put all her energies into fighting the cancer, instead of being forced to divide her efforts and fight her health maintenance organization at the same time.

Managed care executives are becoming multi-millionaires by withholding information and services while unsuspecting patients are left without the coverage they were promised when they were well. In all too many cases, these patients are left with no other option but to go home and die.

Christy deMeurers deserved open and honest communication with her doctors and with her health coverage provider. Christy deserved to know up-front her doctors were financially disincentivized from prescribing the care she needed. Christy deserved to get the same information any patient would have gotten, regardless of her health care coverage. Christy deserved to get open and honest answers from her doctors regarding the best course of treatment for her disease without interference from managed care executives who are more concerned with profits than they are with the health of the those they are paid to care for. Christy was victimized by her health maintenance organization.

With new legislation mandating disclosure laws, outlawing "gag" rules, and supporting patient rights, we can prevent having what happened to Christy from being repeated ever again. I am here before you today to ask you to do everything within your power to prevent the tragedy my family experienced from happening to others.

I implore you to pass legislation that will require full disclosure, and which will require open and honest dialog between patients and their doctors, such as "Patient's Right to Know Act" and the "Patient's Bill of Rights" proposed by the Association of American Physicians and Surgeons embodied in the Concurrent Resolution introduced by Rep. Linda Smith.