RE: Trouble in Sovaldi Land?

[mac790]

Hey Guys, I thought this was worth bringing attention to:
http://www.healio.com/hepatology/hepatitis-c/news/online/%7Ba024e17c-a849-4cdd-86d2-3efab75cf434%7D/study-shows-low-svr-among-veterans-on-sovaldi-based-regimens?utm_source=maestro&utm_medium=email&utm_campaign=hepatology%20news

I hope this is just an anomaly, in particular for those who shelled out big $$ to get it. The data keeps rolling in, on all of these "*.svir" meds.  Finally enough time has passed post treatment to see what the reality is.       mac

[SurfsideGal]

Here is the email regarding reporting hepatitis C:

49 state and D.C. have laws that require reporting of hepatitis C.  The specificity of the laws vary from state to state.  Most states have a general law that requires reporting of hepatitis C.  Some states have more specific laws.   In California, Connecticut, Indiana Kentucky, Louisiana, North Carolina, and Texas, the law only requires reporting of acute cases.  The laws in Georgia and Montana explicitly require reports of past or present infections.   And, as I’m sure you’re aware, reporting practices in a state don’t necessarily match the legal requirements.   Also, since the below request mentions federal laws, just a note that the states are not obligated to report to CDC/federal government.  

Cecilly Campbell JD, LLM
Division of Viral Hepatitis
National Center for HIV, Viral Hepatitis, STD and TB Prevention
CDC

[JimmyMose]

Just like we all have "bottoms" we all have our opinions. I "agree to disagree"
https://en.wikipedia.org/wiki/Agree_to_disagree
"After all, those who will live in peace must agree to disagree in many things with their fellow-labourers, and not let little things part or disunite them."
Whitefield had used it in a letter as early as June 29, 1750.

Time for me to take an electronic communication stress break.  Will be traveling to two music festivals Grassroots in Trumansburg, NY and another one in Scranton, Pa Camping in a tent with 15' high inflatable bed.

Wish everyone the best. Back next week.

[mac790]

C-D-M,   I've known Pat for a long time, and she has no malice in her heart. She obviously has experience in this field that I do not. My personal experience with a combat Vet was with my Father, who after enduring Kamakazie strikes on the carrier Essex came out of the service a changed man. He did everything possible to neglect his health, and am sure he was suffering from what we now recognize as PTSD. Perhaps "survivor's guilt" as well, who knows? He would never talk about it. He became a totally different individual. Between the metal stress, the unsanitary living conditions sometimes necessary, exposure to all sorts of toxins, the heavy reliance on tobacco products to ease the stress, exposure to foreign illnesses, and a medical care system that fails them miserably in a lot of cases, it would be no great surprise if the Vets were not as healthy as their civilian counterparts. I am sorry you took offense to what Pat said, but I feel it was done with the best of intentions. It is odd, I have been posting here for 2+ years, and this one topic has generated the most dialog. Dialog is good, and "ignorance in action is fearful".Someone a lot smarter than me said that once, and I  heartily agree. The poltiticians are an endless supply of hot air about the problems of the VA, but offer us no concrete overhaul plans for a system that still generates horror stories about lousy care on a regular basis. That is the real shame of it. As far as "cherry picking" who gets to participate in a clinical trial, the inclusion/exclusion criteria varies between drug maker, but tend to be very tedious and exhaustive.The exclusion criteria were extensive, the blood panels were the most thorough I have ever seen.I had to get an endoscopy for varices, and a core liver biopsy. They checked me for HIV on every visit. They were also doing tox screens, although they never told us that, the whole time.  I missed out on the trial before mine because my RBC count was a few tenths below the normal range. So, I don't think it is so much "cherry picking", but selecting candidates that were healthy enough other than their HCV to make sure these new meds were not going to have adverse effects. The long term sfx/SVR data are still the big mysteries though... Except for chiming in on the forum though, I have put it behind me. My liver will never get measurably better most probably, but at least I shouldn't progress to Stage 6. As with all in life, there are no guarantees, so I choose to relegate my HCV to my subconscious.  mac

[dontworry_behappy1]

These forms about information CDC (federal) are on the referenced page.
Regardless, this thread is about reporting information that came from the VA.
The general publics information comes under different set of rules than the VA.   Bet the information is a lot more accurate from the VA than the public which doesn't disclose all the other factors like who took the medication as directed and who didn't.  

[SurfsideGal]

Not my point DW. My only point was in asking if there were federal laws requiring the States to report chronic hep C to the CDC. The answer is a definite no. Hepatitis C is still not listed by our government as a reportable disease on a federal level. I realize I did not make my question clear in the beginning. I also don't see it as an issue re hippa and disclosure as it could be done anonymously. If the States would report all cases,We would have a better handle on surveillance. But, 20 years later, we still do not.

[dontworry_behappy1]

Public Health reports to the CDC.  I do believe the states don't having any issue with reporting that information.   There is no benefit to not providing the information.  Statistical information comes from the states/county health departments.

http://www.cdc.gov/hepatitis/statistics/index.htm

There are forms to provide much more detailed information and I'm sure the CDC "should ask" and would love to but the ADA law won't let them.  Yes we do have laws concerning this matter that protect us from disclosure.

http://www.cdc.gov/hepatitis/statistics/index.htm