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StretchBones

Harvoni Treatment for Hepatitis C - Many VA Facilities Not Following Federal Guidelines

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I was diagnosed with Hepatitis C by the VA in December 2016. I was told by my primary care provider at the CBOC (Community Based Outpatient Clinic) that I would have to be completely sober and clean for six months before I could get a consult to the Hepatology Specialty Clinic in order to receive Harvoni treatment. In January 2017 I self admitted to a VA Mental Health Facility for PTSD and Substance Abuse Treatment. I was told the same thing by my treatment team at that facility..that I would have to wait til I left there before I could go to Hepatology. The Nurse Practitioners at this facility wouldn't even allow me to get the CT Scan of my liver completed at the hospital I was a patient at, despite the fact that I had an order for one from my primary care doctor still open. At around the end of my first month in this VA Hospital I was told to go back to the lab for the second time in one week, which was abnormal. When I asked why, the staff said that they could not tell me, but I overheard mention of my liver enzyme levels having tripled since my admission and that the providers were considering cutting me off all of my medications, psyche meds and meds for physical ailments as well. The staff would not grant me an appointment with the only prescribing MD on the staff of this program that hosts a little over 100 veterans nearly year round. Since I had met this MD once before, and she had placed me on meds which were helping, I simply went to her office and banged on the door demanding the speak with her. When she found out that the NPs had been denying my requests to have my liver CT completed and had denied any other sick call slips that I filled out in regards to my Hep C she went ahead and made sure that I recieved the needed tests and she had my consult to Hepatology scheduled for less than a week and a half away.  When I made my Hepatology Appointment, I simply had a 30 minute meeting with a NP, a 1 hour medication education class, and by lunch that day I had in my hands the full course of Harvoni that I needed to cure my Hepatitis C. I was actually cured before I discharged from the hospital, and had completed the full course of treatment in less than six months since my diagnosis. Now that a brief recap of my personal dealings in regards to Harvoni treatment, I will quote directly from the VA website some information about the VA's current stance on Hep C treatment.

https://www.va.gov/opa/pressrel/pressrelease.cfm?id=2762

"WASHINGTON – The Department of Veterans Affairs (VA) today announced that it is now able to fund care for all Veterans with hepatitis C for Fiscal Year 2016 regardless of the stage of the patient’s liver disease. The move follows increased funding from Congress along with reduced drug prices.

 “We’re honored to be able to expand treatment for Veterans who are afflicted with hepatitis C,” says VA Under Secretary for Health Dr. David Shulkin.  “To manage limited resources previously, we established treatment priority for the sickest patients.  Additionally, if Veterans are currently waiting on an appointment for community care through the Choice Program, they can now turn to their local VA facility for this treatment or can elect to continue to receive treatment through the Choice Program.”

VA has long led the country in screening for and treating hepatitis C. VA has treated over 76,000 Veterans infected with hepatitis C and approximately 60,000 have been cured. In addition, since the beginning of 2014, more than 42,000 patients have been treated with the new highly effective antivirals.  In fiscal year 2015, VA allocated $696 million for new hepatitis C drugs (17 percent of the VA’s total pharmacy budget) and in fiscal year 2016, VA anticipates spending approximately $1 billion on hepatitis C drugs. VA expects that with the expansion, many more Veterans will be started on hepatitis C treatment every week this fiscal year. 

In addition to furnishing clinical care to Veterans with hepatitis C, VA Research continues to expand the knowledge base regarding the disease through scientific studies focused on effective care, screening, and healthcare delivery including to female Veterans and Veterans with complicated medical conditions in addition to hepatitis C. "

and also from:
http://www.infectiousdiseaseadvisor.com/hepatitis/antiviral-treatment-offered-to-all-veterans-with-hep-c/article/521718/
 

"The VA will treat all veterans with HCV, regardless of the stage of their illness and whether it was contracted during military service. Since 2015, the number of veterans being treated with HCV antiviral therapy has doubled to nearly 1100 patients per week; the VA hopes to increase that number to 2000 patients per week by the end of 2016. Additional efforts are being made to screen all veterans born between 1945 and 1965, who account for more than 75% of HCV infections.

Veterans with drug or alcohol addiction are not excluded from VA treatment, but those with suspected adherence problems will not be offered treatment."

And this is from an e-mail that I received from the VAHRC Office on May 12, 2017:

"Thank you for bringing this to our attention. We will reiterate to the field that it is not our policy to have abstinence-based policies at VA and everyone should be evaluated for treatment. Treatment should be determined on a case by case basis.
In the meantime, please let any Veteran who has concerns they can contact our office at any time either directly or at vhahhrc@va.gov "


 Now that you have read all of that, I will tell you something horrible. All of the information given above was given to the staff at the VA Hospital where I was a patient and where I started and ending taking my Harvoni. However, it appears that until change is forced on this facility, that I will be the only patient to go through the Mental Health Residential Recovery Treatment Program, that was cured of Hepatitis C while a patient there. When I left there May 15, 2017, there were 10 other Hep C positive veterans enrolled in the same program that I was. All were being denied to see an MD, all denied HCV labs to check viral loads in the liver, and all denied CT scans to see if their liver had developed cirrhosis or developed other issues. I went to the Patient Advocate at this facility (who was amazing by the way) for each veteran there and the Patient Advocate pushed for them to receive the same care I did, and all were denied. I wrote a letter to the Director of the entire hospital, which included copies of VA Hep C Guidelines, and received no reply. Then on the second Monday in May there was a mandatory meeting for all veterans in the MH RRTP program and all staff of the program as well. A bunch of small rule changes were addressed and veterans were given an open floor to ask questions. I wanted the MHRRTP Director to "Please explain to me how my life was worth saving, and my Hepatitis C was worth curing, but other veterans in this program are being denied to even talk to a doctor about it". We were given in return a spill about how "Treatment isn't the place to start Hep C Treatment". Followed by "It is a very expensive process and we are looking and maybe ways to ask the VA to open a Hepatology Clinic here sometime in the future" And she concluded with That "there are a lot of really strong side effects of the medicine, especially if don't finish your treatment, and you need to be sure that you can complete it before you start".  I rebutted that by telling her that Treatment ABSOLUTELY was the place to get Hep C Treatment. I gave her direct information from a government funded study that showed that 96 out of 104 long term opioid addicts would relapse within the first three weeks of leaving treatment if it was their 1st-3rd attempt at treatment. Since the Harvoni treatment time frame is actually around the average time that veterans spend at this MMRRTP getting them cured of the virus before they left and became a relapse risk could help stop the spread of the virus. I also let her know that the previous Friday, a veteran who had been denied any Hep C Treatment at this facility had overdosed. He was a good friend of mine who was kicked out of the MHRRTP for relapsing, after he was denied access to providers who prescribe for Buprenorphine treatment. It was confirmed that he was back actively using IV drugs and was using and sharing paraphernalia with another veteran before his overdose. When it came to her statement about expense I gave the precise figure that the VA already spent to have enough Harvoni on hand to treat all veterans with Hep C this fiscal year and that there was no need to wait for this hospital to get a Hepatology Clinic when the free shuttle that runs twice a day at this facility can transport veterans in this program to one that is already operating. On the point about the "strong side effects" she was clearly talking about Interferon and other older Hep C treatments, because the side effects to Harvoni are rather minimal. I also asked how being in a hospital with 24/7 medical staff on duty would not be more preferable than treatment on an outpatient basis if side effects of treatment was one of the reasons she was giving for barring veterans in this program from receiving this care. I was eventually cut off from making any more comments and the meeting was abruptly ended right after she said that this hospital was going to put a policy in place that would state in writing that Hep C Treatment would not be afforded to patients in the inpatient MH RRTP program and that the program was going to start a new Hep C Group that would meet once a week where veterans in the program could learn about the illness.  I should also note that all of the other Hep C positive veterans that I met in this program were all told by their primary care providers that they would have to be clean and sober for anywhere from 6 months to 1 year before being given a referral for Hep C treatment. All of these veterans were told this in 2016.

I have been in contact with both Senators from my state and the one Representative from my district regarding this. Though all 3 were very quick to contact me back, so far it seems that progress forward is slow moving, if not stalled. I have been in touch with some rather large veteran's advocacy groups, with all but 1 deciding to change their mind about tackling the issue due to the fact that they do work with the VA or organizations close to the VA on some things. At the moment I am dealing with the VA's Inspector General's Office, which may in fact turn out to be rather promising. It was when I informed the IG that a facility that has nearly two million dollars worth of Harvoni in their pharmacy was going to end up letting all of that medicine be destroyed due to it expiring because they were denying patients access to Hep C Treatment. Which is a very sobering and sorrowful though. The VA is sitting on nearly $1,000,000,000.00 of life saving medication and will likely end up having to destroy millions to hundreds of millions of dollars worth of it because it expired before patients could get access to it.

So has anyone here been prescribed Harvoni in the past? Were you told that you had to follow a different set of guidelines than those that the VA put out in 2016 regarding this treatment? And please if you know any Hepatitis C positive veterans, please tell them about this. If you do know of anyone who is or has been denied Harvoni in 2016 or 2017 message me because I am working many angles on advocacy on this issue and am trying to see how big of a problem this is with the VA outside of my home state.  Thanks!

 

Edited by StretchBones
Fixing some typos

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We have a Hep C expert, member , who is also a Hep C veteran-Alex Graham ( asknod) and here is a link to some radio shows he did on many subjects to include Hepatitus:

https://asknod.wordpress.com/category/svr-radio-on-hadit-com/?iframe=true&preview=true%2Ffeed%2F

Welcome here...you are doing what many vets need to do, unite with other vets with the same problems and then force the VA to listen and do something about it.

I am sure you are familiar with Ben Krause:

http://www.disabledveterans.org/2016/09/07/hep-c-va-calls-lack-funding-use-death-panels-controversial/

And if you google ( I suggest using Google independent of the search feature here) you will find discuss on the VA "
Death Panel" BS and others who deal with this.

Were you ever on the Rocky's next Hep C site? maybe 15-20 years ago?

Asknod is also a registered VA agent. I am sure he will see this post today. I am shocked about the

exopired meds.  Not too shocked however.......

In 1997 the VA tried to deny my claim for DIC, saying my husband might have had a "fatal encounter" with cocaine that caused his sudden fatal heart attack. My husband didnt even drink and was a Day Treatment patient at VA.

I was furious with how, as a widow ,the VA was treating me with this DIC claim.

I went balls to the wall and called the director's office ,who I was on a first name basis by then and rattled off this BS denial, and asked the Director's secretary an odd question.....

I asked if there was any cocaine on the premises of this VAMC ( we didnt have drugs here for sure)

Her answer was "Yes".

Long story- I won the DIC 4 ways , the first award was based on FTCA award - before I forget Alex has had a book published-----I love it..and am writing one too- called "Death by VA"- those denials from VA will be in it.

I found out where the cocaine was...in the safe of the VAMC director's office here in Bath NY. 

I dropped a dime on them with my Congressman, who had been Very attentive to my problems and he was STUNNED and did whatever he did to get rid of the cocaine there.

It was liquid cocaine left over from the days their dentist used it on VA pts.

My long point is if you pick a scab it will bleed.....maybe not a good pun to use for a Hep vet...sorry ...

The VA withheld the autopsy on my husband ( he had been an organ donor and had to be cremated) and the autopsy had a complete toxicology profile---no drugs at all, just a few residuals of VA meds....meds I proved to OGC had contributed to his death. When the posthumous C & P doctor ( who made th cocaine statement in the denial) got my next call, he was stunned too and we had a VERY interesting conversation after we both calmed down...

Stick with what you are doing and  never be unwilling to ask a question because that helped me get a lot of shit on the VA. I still believe they have a "Death Panel".

Shulkin has a lot to learn yet.So does POTUS.CC him in with any copies of letters you send to the new Sec.

Very few vets take the bull by the horn on stuff like this.

Maybe Chris Attig...member here, could suggest any lawyers who might be willing to start a class action.

Have you been in contact with NVLSP yet?

They won the biggest class action for vets in my lifetime---Nehmer....Beverly Nehmer - Agent Orange widow.

 

 

 

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PS, the C & P doctor years later agreed with my AO DMII claim, but as he said, he would never be opicked again by my RO to opine on my claims beause I knocked both of his opinions down ( we laughed at that-=it was true) This was a GOOD VA doctor, and he had been pressured by VA to deny the claim anyway he could.

They made sure he would do that by failing to give him the autopsy. They stoop as low as they can go.

But that is when, if a claimant gets tough, and fights their war of the words with evidence, they are vulnerable to an attack from the rear....and each flank.That is how some of us hardcore claimants have succeeded. I am sure we have had other Hep C vets here.

 

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Just one of Many articles on the VA Death Panels:

http://www.frontpagemag.com/fpm/225966/va-scandal-what-death-panels-look-matthew-vadum

and one of many VA scandals over the years.......due to good VA employees blowing the whistle on them.

Have you contacted the new hot line from POTUS for VA complaints?

 

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some more info:

http://www.hepatitiscentral.com/hcv/vets/bb this might be the older circa 2000,  Rockys next site.

http://vets.yuku.com/search/topic/topic/98348#.WTqdCGjytnI old post but there might be more at the site

https://www.hepcdragonslayers.com/forums/forum/veterans-forum/ seems to be active site

https://forums.hepmag.com/index.php?topic=4408.0

When the  VVA won the first Hepatitus air gun case, I called up the NSO:

My daughter's arm bled ( USAF) from the innoculations.I dont know if that is in her SMRs.Normal bleeding I guess is usual. A VA nurse pulled an IV out of me years ago and I bled so bad another nurse fixed me up and reported it to my doctor. He , the nurse that stopped the bleeding, told me there had been many complaints against her and he went right over to tell the VA doctor who treated me about the incident.  Other than that the care was swell -just an overnight.Fabulous breakfast.

(I am not a vet.)

 

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