The other night, Ochsner Health System presented a show called "New Treatment Options for Hepatitis C." Dr. Nigel Girgrah (Multi-Organ Transplant Institute) and PA-C Jennifer Barrett spoke about the newer protease inhibitors that have been added to the Interferon/Riba standard treatment as well as the "unique patient centered clinic setting at the Hepatitis C clinic at Ochsner."
I submitted an email that had several questions about these new treatments as well as their opinions on supplements, diet, etc. I spent some time on it and included several links to NIH abstracts as well as an article about the limits on the newer Direct Acting Antivirals. At the end of the presentation, many folks called in and a couple of emails were read. Mine wasn't but it turned out that they had not received it.
At any rate, the show was both sad and comical at times. Most callers knew nothing about HCV and a couple had just learned that they had the virus after donating blood. But most wanted to know what they could do to help out their livers via diet or supplements.
Of course, they were told that there was no known diet that could help them and that milk thistle really didn't do anything. Dr. Girgrah said that there had been some early research done that showed that it helped but overall, nothing could help them except treatment. He also said that there really wasn't a "Hep C diet". I did a lot of screaming at the TV. There is so much info out there that there is no excuse for any medical doctor to not be aware of the importance of diet in any disorder. But this is not uncommon as back when a lot of these docs were in Med School, diet was a non-issue and they were not trained at all when it came to the importance of food. To be fair, New Orleans is probably the worst place on the planet for expousing "healthy food." Going gluten-free is extremely difficult and going low carb at the same time is almost next to impossible, particularly if one goes out to eat in restaurants. Still, when dealing with liver patients, I would hope that over at the unique patient centered clinic, there is at least a nutritionist available for consult - and not just for obese patients.
A worried Mom called in about her 20 something son who had just gotten out of the hospital with complications due to his HCV. He had no insurance. She asked the team what she should do. There was a deer in the headlights moment of absolute silence. I let out a laugh that I fear woke up my neighbor's 2 year old baby. The doctor did rally and mentioned getting into University Hospital"s system which offers care to low or no income people. Then he concluded by telling the woman to get him into "some kind of insurance program". At this point, I could hear the baby crying through my apartment's wall from my shrieking. Oh sure, try getting health insurance with Hep C. I had called Ochsner years ago and was told that they needed a $500.00 deposit just to walk into their clinic - it's probably much more now.
A man called in to report that his viral load had recently skyrocketed. What could he do? Of course, nothing but treatment would bring it down. Yes, treatment or using LDN. Whoever you are, please check out my labs - any of them. From 1,500,000 to it's current 16,500 by using Low Dose Naltrexone or LDN. It might not quite clear the virus but it will knock the crap out of it!
A 77 year old woman with congestive heart failure also called and asked if the new treatments would benefit her. She was told that with her condition, she wouldn't be a candidate but hopefully, in a few years when the interferon free stuff in the pipeline comes out, that would work for her. She'll be in her 80's then. The lady also asked if there was something she could buy at the drug store to help her liver and of course was told no.
I guess that it's been too long since my diagnosis of HCV over ten years ago. I was two months short of my 50th birthday and thought that I was going to die. I forgot that paralyzing fear that I felt until a couple of callers said that they had found out recently that they had the virus but had done nothing about it. They were scared to death and didn't know what to do - that was the heartbreaking part. I found out one day that I had it - spent the night reading about it and was at Charity Hospital clinic the next morning at 6:30 to get in line. But that's me - these poor folks paralyzed with fear. For their part, the Dr. and PA Jennifer Barrett did tell them to go see their doctors for more testing. It's very evident that they both care deeply about their patients and only want the best for them. And what it is best for them is to clear the virus. I am assuming that they are using the Response Guided Therapy to monitor the patients progress.
What has become more evident to me through this show is the desperate need for a Hepatitis C support group in New Orleans. Prior to Katrina, E. Jefferson Hospital offered one but they never started it up again. In New Orleans, musician Timothea Beckerman had established "Siren to Wail" and was very active in securing free HCV testing as well as organizing musical events to raise awareness of HCV. She appeared often on WWL TV. I spoke with her on the phone a few times after I was first diagnosed but never met her. Sadly, she passed away soon after Katrina in 2006. I'll never forget. I was watching the noon news on WWL and Eric Paulsen reported her death. I was shocked and numb.
I have been toying with starting such a group but as you all know, my interest is in alternatives - LDN, supplements and diet. I never wanted to be a cheerleader for those who actualy want to do the current treatment, direct acting antivirals or not. There is a lot of research out there that could help folks get through treatment with more success - lowering one's serum ferritin before treatment and raising both their Vitamin D3 and B12 levels. And I suspect that eliminating gluten would go a long way, particularly as both the Incivek and Ribavirin cause horrible rashes. Vertex just had to put a black box warning on Inivek (telaprevir), due to it killing people due to skin rashes. The FDA has received at least 112 reports of patients developing very serious skin conditions, particularly as a result of using Incivek. There are hundreds of NIH abstracts linking gluten with all skin conditons, as well as most medical conditions out there.
I guess that I don't know what I was expecting from the show, but it turned out to be the same old, same old. Medical staff trumpeting the higher SVR rates with the new drugs - up to 90%! What wasn't mentioned was that in people who had failed treatment before, the percentage was at @ 30-35%. And also the chance of developing a resistance to the drugs and having to stop - which would probably make future treatments with similar non-interferon therapies even more difficult.
Sigh, all of the above was in my email to the show that supposedly never got to them. Maybe it would have turned out differently if it had though I doubt it.