Dr. P believes that John is doing well, especially given all he's been through in the past six months. They discussed the next phase of treatment before he can be listed for a kidney transplant: clearing his body of Hepatitis C (HCV). There are some treatments available now, but they can not be used in transplant patients. The HCV load has remained fairly low for the past 22 years, and recently started progressing. There is some urgency to getting treatment underway, as John's liver damage is severe enough that he is close to needing a liver transplant. One of the theories as to why the HCV did not become a problem until recently is that the immunosuppressants he was taking to ensure his immune system would not reject the transplanted kidney also kept the HCV in check. He is no longer taking the immunosuppressants.
There is a new oral drug regimen that clears most HepC patients of the virus. Cures them. The medical professionals are excited about this, and the trials a few years ago were hugely successful. The problem is that the insurance companies don't want to pay for this very expensive treatment. Also, dialysis/transplant patients have some restrictions.
Patients pay steep price for HepC cure. Chicago Tribune
Washington Post Article describing the money-making situation of Solvadi
In the meantime, a trial was done with the new meds on dialysis patients. It worked! The gastrointerologists and neuphrologists are thrilled. Now they wait for the NIH to finish 'reviewing' the trials, and for the FDA to approve the meds for use in dialysis patients. THEN the insurance companies get to decide if they will pay for it. Click on the articles above to see how well that went in other countries.
So the battle becomes fighting Big Pharma before we can fight the HCV. John's docs were hopeful about having treatment in December, but it could be longer.
Modern medicine has saved John's life several times. It is maddening that we have a cure in sight, and it is up to insurance and the pharmaceutical company to decide if he gets it.
Next Boston appointment: November 4. Hoping for some good news about available treatment for HCV so that we can work on the end goal: transplant #3.