Recently, we discussed that obtaining a second opinion for a mesothelioma diagnosis is a personal decision. Today we turn our focus to the process of actually getting that second opinion. Unfortunately, in this age of insurance bureaucracy it can be most difficult to obtain a second opinion from a provider outside your insurance plan. Many HMO regulations require that the insured be treated within their network of providers. The problem? There are very few physicians or surgeons with the expertise needed to treat pleural or peritoneal mesothelioma.

Let me tell you about some of the challenges two mesothelioma patients had to overcome before they could obtain a second opinion.

One gentleman, I will call Jimmy, noticed that over the months he had been putting on weight around his belly. Like most middle-aged men he attributed his weight gain to overeating and lack of exercise. He took it upon himself to begin a strict diet and vigorous exercise regime. Nothing worked and his starvation diet eventually placed him in the emergency room. After numerous tests and exploratory surgery, Jimmy learned he had peritoneal mesothelioma. He sought treatment from an oncologist within his insurance plan only to be told by the oncologist that he had no expertise in treating mesothelioma.

Jimmy went back to his primary care physician, who arranged for him to meet with a mesothelioma specialist. A consultation was approved by his insurance company, and an appointment was scheduled. However the consultation was canceled after the specialist learned that Jimmy had peritoneal mesothelioma. You see, the specialist was a thoracic surgeon who limited his practice to that of mesothelioma of the pleura.

Through the help of the Mesothelioma Applied Research Foundation, Jimmy found a surgeon that was qualified in the treatment of peritoneal mesothelioma. Before Jimmy could meet with this surgeon he was required to file a prior authorization provision with his insurance carrier. He obtained the necessary referral from the first treating oncologist and assumed it was approved. He scheduled an appointment with the surgeon and forwarded his medical records.

However, Jimmy faced another setback when his insurance carrier denied the request because he did not follow through with the first outside consultation. This was clearly a lack of understanding by the insurance carrier about the complexity of Jimmy’s cancer.

Jimmy was told he could file a grievance that would be heard on an expedited basis if he could prove that the standard grievance hearing process of 30 days would be detrimental to his health. With the help of the new surgeon’s staff, information about peritoneal mesothelioma and the surgeon’s treatment protocol was provided to the insurance company.

Through diligence and determination, Jimmy took on his insurance carrier and won!

Hazel was faced with another problem. It took the doctors in her HMO over a year to diagnosis her with pleural mesothelioma. When she was finally diagnosed, her insurance carrier refused to allow her to obtain a second opinion. The carrier insisted that she use one of their approved thoracic surgeons to perform exploratory surgery. Hazel met with the surgeon who honestly told her that he had never performed surgery on a patient with mesothelioma.

Disgusted with her insurance company, she took matters into her own hands. She gathered all her medical records and with the help of the Mesothelioma Applied Research Foundation located a thoracic surgeon with expertise in treating mesothelioma patients. After undergoing all the diagnostic testing, Hazel learned that she was a candidate for surgery. Again, she contacted her insurance carrier requesting coverage for “out-of-plan” services. Again, she was denied.

Fortunately, Hazel had money available to obtain the best treatment and went forward with the surgery.

Unlike Hazel, Maryanne didn’t have the resources to insist on a second opinion. She blindly, without complete knowledge and understanding of her disease, put her treatment in the hands of a local oncologist.

The chemotherapy protocol was not effective, and Maryanne suffered severe side effects. Months later, her son stepped in to take control. Together they traveled to the Mayo Clinic in Rochester, M.D.; Anderson in Houston, University of Colorado Cancer Center, University of Chicago Cancer Center and New York City for second, third, fourth and fifth opinions.

Regrettably, all told Maryanne and her son the same dismal diagnosis. Maryanne had waited too long. The cancer had metastasized to her liver and there was nothing that could be done.

The point of sharing these stories is this: if you have any question or concern about the care you will receive, use all resources available and all means necessary to obtain second and third opinions regarding your treatment. It’s your life, not the insurance company’s.

  • Make your primary care physician and his staff your ally;
  • Enlist their help for all referrals and laboratory testing;
  • Understand the terms of your insurance coverage;
  • Scour the Internet for new protocols and providers near your home;
  • Contact Mesothelioma Applied Research Foundation or other non-profit agencies to help locate medical professionals and put you in touch with other mesothelioma patients;
  • Rely on your family.  Give each a task or responsibility to help you secure the best treatment, and;
  • Believe in yourself.

Hopefully, there will soon be significant changes in the insurance industry to allow people the ability to seek out the best care available, even if it is outside of their insurance plan.