HMO Thwarts Treatment Plan
Mark Stewart grew up in Great Falls, Montana. At the age of 17, Mark enlisted in the U.S. Navy with his older brother. Mark did his basic training in San Diego and was assigned duty aboard the USS Arnold J. Isabel, a destroyer. Mark served his country from 1960 to 1964 as a Machinist Third Class.
In 1965, after an honorable discharge, Mark went to work for McDonald Douglas in Long Beach, California. He was eventually promoted to manager of the welding, tubing and metal fitting shops.
Mark married his wife Toni in September, 1964. They have three children: Kelly, age 27; Mark Jr., age 24; and Kim, age 17. The Stewarts are very close and all three children continue to live at home. Kelley is a rape crisis counselor; Mark works construction and Kim is a high school student.
In September, 1998, at the age of 55, Mark was diagnosed with malignant pleural mesothelioma. About a month before his diagnosis, Mark began to experience shortness of breath even while sitting down. Concerned about his health, he went to see Dr. Joseph Lombardo in Orange County. Dr. Lombardo ordered a chest film and referred Mark to Dr. Ahmed Badr, a pulmonologist. Dr. Badr ordered a CT scan, which revealed a large right pleural effusion.
On September 3, 1998, a thoracentesis was performed. The fluid was sent to Impath Laboratories for examination. The pathologist ruled out adenocarcinoma, but asked for additional testing to firm up the diagnosis. After performing immunohistochemical staining on the tissue, the pathologist favored malignant mesothelioma.
On September 28, 1998, Dr. Badr performed a bronchoscopy in combination with a pleural biopsy and thoracentesis. The final diagnosis was malignant mesothelioma.
On October 8, Mark consulted with Dr. Dean Lim, an oncologist. Dr Lim recommended decortication or pleurodesis followed by chemotherapy. He encouraged Mark to see a surgeon before deciding on a treatment plan.
Mark met with Dr. Anne Billinsley, a cardio-thoracic surgeon. In Dr. Billinsley's opinion, surgery by itself would not remove all of the tumor cells. She explained that decortication and/or pleurectomy would be a "bloody mess" and she could not assure that the procedure would significantly extend Mark's life. Dr. Billinsley recommended pleurodesis using talc to stop the pleural effusions. Dr. Billinsley did not specialize in lung tumors or mesothelioma. There was also some confusion with the insurance company over which treatment they would cover.
The Stewarts were not terribly satisfied with Dr. Billinsley's approach, as they got the impression that it would only serve to delay the inevitable. Mark requested a consultation with Dr. Robert Cameron at the University of California, Los Angeles Medical Center. During their meeting, Dr. Cameron discussed numerous treatment options with Mark. Dr. Cameron suggested that Mark undergo a pleurectomy and decortication for tumor debulking and palliation. In addition, Dr. Cameron recommended intrapleural chemotherapy, and post-operative radiation therapy. This was the aggressive treatment that Mark had hoped for. The Stewarts were pleased to finally find a doctor who knew what mesothelioma was and how to attack it. They agreed to undergo a pleurectomy.
What is best for a patient, however, is not always best for a bottom-line oriented, bureacratic insurance company. A day before the surgery, Mark was abruptly notified by his HMO that Dr. Cameron, who is widely regarded for his expertise in treating mesothelioma, was not an "approved" doctor under his health insurance plan. Dr. Cameron simply wasn't on the pre-approved list of doctors who were part of the insurance health plan.
The HMO bean counters stubbornly refused to look beyond the black letter of their policy rules. The HMO wanted Dr. Billinsley, who was trained and experienced as a cardiac surgeon -- not a thoracic surgeon trained to perform a radical pleurectomy with interoperative chemotherapy or radiation. Obviously, the Stewarts did not need this kind of stress. Now, in addition to dealing with an "incurable" tumor, the Stewarts had to deal with an inflexible, cold and lethargic HMO bureaucracy.
The Stewarts felt that they had no bargaining power with their insurance company and felt pressured to pursue the limited options presented by Dr. Billinsly. On December 7, 1998, Mark underwent a right pleurectomy and right thoracotomy, with a portion of his rib removed. Dr. Billinsley performed the surgery.
In the operative notes, Dr. Billinsley wrote that after she had mobilized the parietal pleura, it was clear the diaphragmatic surface had been infiltrated and the tumor was also invading and infiltrating the vena cavae as well as the esophagus and pericardium. (This was also apparent on pre-surgery CT films). Because of the degree of tumor's invasiveness, the pleural reflection over the diaphragm, vena cava, esophagus and pericardium were left undisturbed. The pleura was fully removed. The surgeon spared the lung although it was fully decorticated (i.e., the surface layer or leural of the lung tissue was removed). Three chest tubes were placed in Mark's chest for post-operative drainage due to the large amount of fluid. Chemotherapy was not applied post-operatively into the pleural cavity.
Mark's recovery from the surgery was amazing. Mark continued to have pain, partly because of the large amount of fluid that remained in the lung. For several days Mark's right lung did not re-inflate after the surgery.
A month after surgery, Mark began systemic chemotherapy with Cisplatin with infusion every three (3) weeks. The chemotherapy side effects were terrible. A day after each chemotherapy session, Mark became very ill with nausea and vomiting. Mark could not eat and began to lose weight. Mark also embarked on a rigorous radiation therapy protocol. For six weeks, every day he was irradiated. Finally, the procedure was terminated when Mark's white blood cell count dropped to near zero. He had to wait for immune system to regain strength before resuming the radiation treatments.
In late April of 1999, approximately 4 months after his surgery, Mark had another CT scan which, as expected, showed tumor on the diaphgram, esophagus and around the heart. There is also a concern that the tumors have invaded the lymph system. Mark's doctors have suggested that he return to radiation. The good news is that he has not had any pleural effusions since the surgery and he is now returning to his normal weight.
Mesothelioma is bad, but the pain is compounded by insurance companies that refuse to pay attention to the current literature and authorize out-dated and perfunctory treatments. Mark has not spoken to Dr. Billinsley since the operation. There have been several "changes in the guard" as it were with the HMO doctors. It seems that nobody will take control.
We have urged Mark to bring to his oncologist's attention the new chemotherapy drug, Platar, which is a liposomal formulation of a novel platinum drug that has low toxicity and was shown to have a "complete pathologic response based on biopsy and cytology in 61% and 73% of 17 pleural mesothelioma patients participating in a phase II study."
We hope that Mark's doctors will aggressively work with the doctors at M.D. Anderson Hospital in Houston, Texas and Kaplan Cancer Center in New York in an effort to prescribe Platar for Mark. He does not need a "business as usual" approach. He needs hard-charging, thoughtful doctors who place the patient's health needs above internal billing protocols.
Mark's life has completely changed. He seldom is able to walk. He is short of breath even at rest. He spends approximately 17 hours a day sleeping. He takes vicodin and morphine twice a day for the pain, as well as Naproxen. He and his wife are looking forward to a trip to Alaska this summer to see his brother, who he has not seen in 20 years.
*** POSTED MAY 26, 1999 ***
Mr. Mark Stewart passed away on July 8, 1999
