Saturday, May 26, 2012

Medical Tourism? 

We are hearing more about people going to India and other parts of Asia to get hip replacement and other medical procedures due to the expense and lack of coverage available in the US.  This seemed like an interesting concept to me until I found I need to travel myself to find the type of treatment that is most appropriate for my disease.  I hear and read about other carcinoid patients traveling to Europe to get treatments that are not available in the US

On my last phone call with Dr. Ratner a few weeks ago, he said that he would like to do an octreoscan to help locate my primary tumor.  This procedure is the standard of care in the US for evaluation of tumor location. It also defines if the patient has the proper receptors for some of the radiopeptide therapies available as treatment. If I were diagnosed with carcinoid tumors and lived in Europe or Asia, my doctor would most likely recommend a PET with 68Ga-DOTA-TOC instead of an octreoscan.  This scan has been used in Europe for the past several years and it is widely believed by most of the medical community that the 68Ga-DOTATOC PET is superior to 111In-DTPAOC SPECT (Octreoscan).

The FDA has not approved the PET with 68Ga-DOTA-TOC in the US at this point.  There are however, two locations that are offering this scan as a clinical trial:   Vanderbilt University in Nashville and The University of Iowa in Iowa City.  The problem with the clinical trial is that it may not be covered by standard medical insurance. 

Last week I called Vanderbilt University to see if I would be eligible for a 68-GA PET scan.  I asked whether they would accept me since I had never had an octreoscan. Nor did I know if I had the proper receptors for this scan to work.  I needed to know whether it would be covered by my insurance and if not, how much it would cost.  Finally, I asked how long it would take to get the scan and what other information they required.  They informed they were scheduling for July. They also needed to confirm my diagnosis by having me submit the most recent CT scan report, the pathology reports, the most recent labs and medical notes from my Dr.  If I were deemed eligible, they would verify if my insurance would cover this.  If not, the cost would be about $2,600. I would need to be in Nashville for two days, one for the labs, Dr. appointment and scan and the next day for another Dr. appointment discussing the results.

After sending all this information, they informed me that I was indeed eligible and confirmed my July appointment.  I had an appointment with Dr. Ratner yesterday and told him I preferred the 68Ga-DOTA-TOC scan to an octreoscan. He was quite happy that I had taken the initiative to do this and he agreed it was a much better scan.  He told me they were trying to raise the funds to get this technology at Mount Sinai Medical Center.  I now feel much better about the doctor after this appointment because he took the time to let me ask questions and does not object to having a patient that is interested in new treatments.  No arrogance or attitude there. 

I am hoping that this scan will help me to find the primary tumor.  While I am in Nashville, I will be meeting with Dr. Eric Liu who will examine my case and advise on future treatment.  I am now in a much better frame of mind about my situation, doctor and treatment, even though nothing has really changed since last week.

I understand that an octreoscan costs about $8,500, with insurance covering all of it.  The 68Ga-DOTA-TOC scan costs $2,600, does a better job, is not widely available and is probably not covered by insurance.  Only in America…


  1. Beth,
    I think you are very courageous to write this blog.


  2. My "carcinoid rage" is in full force when discussing the American health system! I've been sick for over ten years. Finally got a diagnosis in Nov. '13, and have been battling my insurance company's "death panels" ever since. My primary tumor was removed, but it has metastasized . Insurance will not pay for Gallium 69 imaging. Will have to settle of Octreoscan, then fight for the drug, Sandostatin. You are so right, Beth McGivern, only in America! What I wouldn't give for SINGLE PAYER HEALTH CARE!