Why treatment for HCV needs to be covered for everyone.

[Mugwump]

There is ample evidence that HCV did not become prevalent until after the Vietnam War. The reasons for this are: many who served fell into drug use post war and brought the disease back from their service in the war.


Secondly and more importantly, the first wide spread transmission of the disease was exacerbated by:
1; Contaminated blood products used on the battlefield. 2; The wide spread use of injection guns for the purposes of mass inoculations of soldiers, school children etc.


Yes the use of street drugs and needle sharing has contributed to the spread of this disease but the original big bump of infected individuals is directly related to the use of blood products on the battlefield. There is also some evidence that the disease first came from the ill conceived use of human blood serum based products to inoculate soldiers against tropical diseases in the Pacific theatre of second world war. 


The facts about how unsafe these devices and methods really were is now slowly coming to light. The fact that Vietnam Vets are at 10 times the risk of having been exposed and infected with HCV speaks volumes about why we need to push our politicians and appointed officials to work towards the final eradication of this disease. 



The stigma, shame and blame is on all of us, so is the responsibility to act.

[FutureThinker]

Just read your story here on hepmag and wanted to thank you. FT

[OrlandoSun]

Was told  recently that United Health Care and Blue Cross in some states, is or has lifted the restrictions or rather requirement that the Hep C sufferer must be F3 or higher .   I actually was told that by a mysupportpath case worker. 
Today in preparing my final appeal (external one with BCBS in FL) 
I couldn't find anything about these changes online. 
called mysupportpath back and the case workers I spoke with don't know anything.
case worker switched me  to the educational dept she didn't know, told me because I had two appeals I qualified for their assistance,   switched me back to case worker that said NO assistance anymore, that ended in July 2015, now they only help those with no insurance.
If its true that Health insurance companies are going to follow AASLD's guidelines and give every HEP C sufferer the cure, that is Great news . 
Can anyone find an article or PDF that states this?
The states she mentioned that now approve everyone on blue cross are Massachusetts, Louisiana, Kansas and north dakota.   
one website that mentioned  is     https://www.healthpocket.com
https://www.healthpocket.com/obamacare/essential-health-benefits#.Vw_w-UdCyyw
I noticed alot of  out of  date info  on the many HepC websites
Thought i'd post this here. 
The states I mentioned may have changed their benchmark plans and or formularies
  I had united health care last year and they denied me all year and then in Jan 2016 approved harvoni after I had already switched to Blue Cross, I am F2 and now being denied in FL by BCBS.  sucks dealing with these people.

[FutureThinker]

Hi OrlandoSun, very sorry to hear re: your denials, I've been there.  The only way I got BS to cover my Harvoni was thru a state review, so that is a very viable option for you, altho I don't live in FL.  Gilead stopped some of their support last July when so many of the insurance companies made deals w/ the Viekira people, in an attempt to put more pressure on them to honor prescriptions for Harvoni. As usual, we patients are in the middle.  I am aware many of the insurance companies are removing restrictions this year, but it seems to be hit and miss. I am not aware of any specifics on insurance companies, perhaps another member can help with that question.  But don't give up!!

If you peruse thru some of the other categories on this forum, i.e., considering treatment, you can find many people who have fought their insurance companies and their strategies.  My post in February, Take it all the way to your state board if you have to" is one. Generics are another route for you to consider, another topic well covered on these forums;Coach Mike has posted a lot of valuable info on this. And, more drugs are going to be available in the very near future (like June), which is going to decrease the outrageous prices of these drugs and hopefully push the insurance companies to cover them. So there is hope one way or another!

I totally get your comment "sucks dealing w/ these (insurance) people"......... they are not there to  help our health needs, but to make a profit. Talk to your doctor and make sure they are willing to go to bat for you, get them involved if possible.  You will find a great deal of info and support here. Keep us posted and good luck, FT

[Coach Mike]

The generics have been proven effective. $1000 will get you 12 weeks of sof/led. Months of frustration fighting for coverage and then seeing the cost reflected in your premiums can be avoided in a very simple way.
No, it is not right to be denied coverage, but, in the end, the insurers aren't footing the bill. We, the policy holders, are.
Gilead is taking everyone for a ride.
I would like to know the ratio between their marketing and research budgets.
Then again, maybe I don't.
CM

[OrlandoSun]

Mike N Future,
Thanks for the comments. 
I am preparing my external appeal now.   Faxed in a request like this for documents:
"Document requested referenced in denial letters  and benefit handbook :
⦁   Please send me All Relevant Documents Utilized and Clinical Review Criteria
⦁   Used in making your decision to deny my medication
But not limited to.   so also these listed below
⦁    Comparative Effectiveness Research
⦁   Evidence showing Differences and Outcomes
⦁   Use Cost data
⦁   Medical Reference material 
⦁   2016 bench mark plan
        Blue Options Contract

In the denial and Benefit Handbook they mention these documents to define "Medical Necessity"  seems that's a key issue. (f3 or higher is their definition)
The other reason mentioned was that i need a new Biopsy or Fibroscan showing 9.5 or higher.
Biopsy is invasive (hurts too)  nearest  Fibroscan machine is 120 miles away.
trying to get that done too,   (a guy told me have a big meal before the scan)

Spoke to someone in the state insurance oversight office.
She said do the appeal first before filing a complaint with them. 
Also consulting with a lawyer,  2 years now & liver is getting damaged waiting  for it to hit F3.

Found out  that on Jan 01 2016 Athem, United Health Care and BCBS in some states  no longer have the F3 requirement to be deemed "medically necessary".   
apparently Floridablue is the hold out on this issue right now.   

[Mugwump]

The whole asinine nonsense with waiting until someone is pre cirrhotic has to be exposed for what it is! This includes Canada and all other countries who are taking a backward and obviously seriously flawed view of treating HCV. Waiting until the individual has liver damage has to stop and now.


The costs of delaying treatment are going to far outstrip the costs of treating now that DAAs can cure the disease. This is exactly the same problem as not immunizing against polio or small pox. This disease does not seem to be one that can have a vaccine created to effectively deal with future transmission so the only thing that makes sense is curing the disease early on for everyone thus reducing the transmission risk eventually to zero by eradicating the disease in the general population.


Unfortunately because of corporate greed we might not see this occur in the place where DAAs were invented, but we might see it happen in countries that tell the greedy corporations to go take a hike. Then there is the possibility of buying out the drug patent and making it publicly available instead of relying on a flawed so called "free market" medical system which obviously produces costs that are beyond reason. 


It is ironic that the so called intellectual property financial big wigs are now making it so the US is actually starting to fall behind the rest of the world especially in medical care for the general populace.

[Coach Mike]

You need to document every medical issue you have. You need to go to your doctor, complain and get medicine prescribed for them. My external review found HCV tx to be a medical necessity based on my documented EHM, in spite of my biopsy score of F-1. The biopsy doesn't hurt anymore, but my doctor won't order one done now. She uses the Fibrosure blood test.
My packet to the review board was 36 pages long.
Write a letter to the board detailing your EHMs and then have reference material (evidence) to back up that they are or have been found to be caused by HCV. Mine were profound fatigue, chronic dyspepsia and GERD, chronic back and joint pain and depression. I had at least one prescribed medication for each if those conditions, in some instances, more than one. That is evidence. The biggie is the letter from your doctor backing up everything you are saying.
I spent 2 years documenting and complaining to my doctor before I even knew I was sick. It still took me a few months to put together a good review packet.
Their finding is final. No one can argue it.
I didn't think they would approve.

I bought generics for $2000 and was Undetected when my prescription denial was overturned and I got my Harvoni.
The generic that wiped out the virus costs $860 now.
It can be in your hands in 5 days.
If I knew then what I know now, there no way I would go through those 2 years of hell fighting for insurance approval. I was 60 years old when I started fighting. I was 62 when I got the Harvoni.
Two miserable years. Poof! Gone.
Cure yourself.
Good Luck,
cm

[OrlandoSun]

Great info
I'm am gonna wait on this before deciding on generics.   would rather take one pill than a few (I don't know much about generics, is that what DAAs are)

What's an EHM   never heard that one before ? 
Being a recovering addict I only take Advil for pain (not everyday) ,   sure I'm tired,  feel feverish and have aches, back issues I am 59 and feeling it.   
My worst fear in life is ending up back on opiates while dying from liver cancer.
(a few friends Died that way )   
I don't want any meds for symptoms, but will take your advice and see my DR about these symptoms and get a letter from him to that effect.

[Philadelphia]

DAAs are direct acting antivirals. They are the new wave of hcv drugs including but not limited to sofosbuvir, daclatasvir, paritaprevir, dasabuvir, ritonavir, ledipasvir, velpatasvir ... etc etc.

Generics are like home-brand or no-name versions of the drugs above. Same ingredients minus the proprietary name and the big price tag. Generics can be produced and sold so cheaply because some places don't recognise the patents applying to the drugs, eg India. And there could be other, different reasons but that's the one I see often.

EHM is extra-hepatic manifestation. Basically, a side effect of HCV that isn't liver-focused. It can affect other parts of your body.

And here's some info on Advil, just in case you have cirrhosis.

"Avoiding Certain Medications: Patients with cirrhosis should not take Non-Steroidal Anti-Inflammatory Drugs (NSAID) such as Advil (Ibuprofen), Motrin (Ibuprofen), or aspirin-type drugs. Tylenol (Acetaminophen) is safe if you take less than six 325 mg tablets each day (2,000 mg per day). Because cirrhosis patients are at increased risk of ulcer disease, you should discuss with your doctor about taking an anti-ulcer drug."

[General Hamilton]

If they covered everyone right away the have a better chance of wiping out the virus for good. If they continue with this strategy of only treating the sickest, the higher the likelihood of resistant strains evolving.

[FutureThinker]

Mugwump, I came across an article from The Lancet yesterday while scrolling around the EASL info online that I think you'd be interested in.  It was at internalmedicinenews.com by Amy Karon, 4/10/16 titled, "Hepatitis C virus transmission peaked in 1950."

The article presents a theory that HCV peaked about 15 yrs. earlier than most have believed (1965) "when medical procedures were expanding after WW II at the same time that clinicians continued to reuse metal and glass syringes....... and negating the idea that the epidemic among baby boomers and other demographic groups in No. America is primarily due to injection drug use, unsafe tattooing, high-risk sex, and travel to high endemic areas during youth."

Interesting to say the least.  FT

[Coach Mike]

My doc said no NSAIDs and no alcohol with HCV. I followed her advice.
As to the HCV timeline in the U.S., it appears to have peaked in the early 1950s. An era of mass vaccinations, immediately following a massive, worldwide, extremely bloody war.
cm

[Mugwump]

FT and Coach Mike; within the literature of the history of military medicine itself there are strong clues that when the US contracted Rockefeller Inc to develop a vaccine for yellow fever they got much more than what they bargained for.


It turns out that many were infected with non a non b early in the second world war. After being inoculated for yellow fever. http://history.amedd.army.mil/booksdocs/wwii/communicablediseasesV5/chapter17.htm


If you extrapolate that many might have not show symptoms and thus went unreported the numbers that did have quick 4-6 month reactions strongly indicate that a great many more were exposed to non a non b at that specific time.


Then if you reason that all soldiers gave blood when called for on the battlefield it stands to reason that the spread of the disease must have been very rapid just after the US joined WW2 and started to ramp up action in the Pacific.


Why this information is not public knowledge is a crying shame! Yes injection drug use and other social problems have exacerbated the situation but the real problem all stems from war. The only explanation that makes sense as to why Vietnam vets are even more prone to this problem than the previous generation is that unsafe military and civilian vaccinations also contributed greatly to the spread of the disease.


It is a shame that great journalism is dead and all we get today is Fox news pablum reporting. It is also a shame that no news outlet and even decent organizations like PBS have not picked up on this topic considering the evidence is there in plain sight for all to see!




 

[Coach Mike]

Well said!!
cm

[FutureThinker]

Mugwump, appreciate your input.  However, I did not read this article to mean only military clinicians reusing metal and glass syringes, but also civilian clinicians.  So while your points are very valid, this one study could point to an even larger population possibly infected this way than only the military.  Eye opening! It's just one study but let's hope more are coming.  FT

[Mugwump]

http://www.wjgnet.com/2150-5349/full/v7/i1/33.htm From the World Journal of Gastrointestinal Pharmacology and Therapeutics


At least there are some intelligent people who have considered the fact that not treating early on in the progression of HCV is economic stupidity at best. At worst it is medicine for profit run amok and monetary stupidity. Like I said all bets are on the side of continued stupidity unless America and the world in general wakes up to the real costs of delaying the treatment of this disease and treating only those who have advanced to the stage of F2 liver damage and higher.

[Coach Mike]

Sick people are going untreated because the price of the drug they need is priced obscenely high.
The government refuses to regulate drug pricing.
Patients should have access to affordable, generic options-especially when the drug companies are being managed as hedge funds.
Australia forced the deal with Gilead because of their generic import policy.
The U.S. could do the same.
cm

[Luna7]

The cost is just insane.
My Sovaldi & Daklinza price tag is $151,000.00!

[Coach Mike]

12 weeks of sofosbuvir and daclatasvir from Mesochem is $800.00.
cm

[Mugwump]

Mugwump, appreciate your input.  However, I did not read this article to mean only military clinicians reusing metal and glass syringes, but also civilian clinicians.  So while your points are very valid, this one study could point to an even larger population possibly infected this way than only the military.  Eye opening! It's just one study but let's hope more are coming.  FT

I agree. However the statement that the first onset of non a non b might be directly linked to military vaccinations for yellow fever with a batch of vaccine that had viable virus particles in it still stands.


My reasoning here is that large numbers of infected military personnel then came home and started the spread in the general population. The timing then closely coincides to the end of the second world war when our medical sanitation and isolation methods were not at all adequate to prevent the spread of this disease.


This makes a great deal of sense because the date of the peak spread of the disease in North America is being pushed back before the 1960's as was previously thought.


With the VA finally admitting that HCV was not a SIW (self inflicted wound) and covering treatment for the huge numbers of vets that are infected, it shows that they are pre-empting the wave of public annoyance that will happen when the truth is known about how this disease became so wide spread in the first place.


The fight for standard universal treatment of this disease is a sensible obligation for any civilized mind. To consider HCV to be an SIW for so many years was a horrible injustice to the Americans who served in more than just Vietnam and put their lives on the line for us all!


We cannot blame the doctors for spreading this plague, they truly did not know the potential infection risks of this strain of retro virus. In the same way you cannot blame the government for trying to immunize soldiers against tropical and other diseases. BUT you can shame politicians and the titans of industry into acting in the public interest by moving to eradicate this disease for their own well being.


Eric

[FutureThinker]

All good points, Mugwump.  I am just hoping this type of information will help reduce the stigma with this disease, as there is some evidence now that many, many people may have contracted this thru no action of their own.  FT

[morab]

This is all great information.
Sounds like we need a huge system change in the US!
I had not thought of the mutation of HCV but that is a frightening thought if so many are left untreated!
Thanks to all on this forum for teaching me so much on a daily basis.
Morab

[OrlandoSun]

Update on my Harvoni Claim, after two denials from UHC in 2014 and 2015, then two from BCBS in 2016, I filed an external Appeal and they approved the drug.  I have heard the term "slow walking"  that's only part of what the insurance does, they look for any way to slow down your claim hoping you either die, switch insurance companies or just give up.   I included in my appeal a letter, an AASLD report i wrote detailing some quotes, my two doctors reports saying I needed the treatment ASAP.
Even now BCBS of FL has not tried to fill my script, I had to call their specialty Pharmacy to verify the approval was in their system, then poked my DR to send them a new script for 8 weeks.   (also applied the Gilead co-pay coupon) and now I wait again.
Moral here is don't give up and don't just trust that your appeal is filed correctly.
Be proactive and ask questions, keep your own set of records and info.  If anyone needs help with their appeals process contact me, I will help.  Thanks for the help received here too.   

[FutureThinker]

OrlandoSun, I could have written your latest post, exact same path I had to go down.......... but we were successful!!!! That's what is important. Keep after the spec. pharmacy, they don't seem to be in as big a hurry as we are to get this treatment started.  I had to call all parties involved more than once to get that Harvoni to my doorstep as quickly as was possible.

My Harvoni treatment went by without hitch, once I finally got my hands on it. No sides at all, experienced the Harvoni High and had increased energy and much better mental clarity for ~ the first half of the 12 weeks, then the energy leveled off but was (and is) much better than before treatment. Definitely have much clearer thinking, a very nice surprise. The water advice is very important! The drugs have a real dehydration effect, so be sure to drink plenty of fluids.

So very happy your hard work has paid off! Keep us posted, and best to you on your ride on the "Harvoni Train" -- I found it to be a very enjoyable journey and hope you do, too.  The future is bright! FT

[OrlandoSun]

Future thinker   glad the cure worked for you.   UD at 8 weeks   yay.   
I hope mine works too.   
During the process I researched the law some, in Florida we have FLOIR   insurance oversight peeps,   before one can file a lawsuit they must file a complaint with the FL IOR and give them 60 day notice of intent to sue.   They are the ones that serve the Summons/complaint on the insurance company.   Seems it could be a waste of time suing now that its approved, but I would like my experience to effect change.
lawyers won't take a personal case unless their is sure big money for them ,   there are a few class actions going on, but participants get little.   
Filing a pro se' lawsuit is complicated,  proving breach of contract and damages will be tough when you have a "fool for a lawyer"   
Still I will be looking into this and at least consulting a knowledgeable attorney before filing a dismiss able complaint.   
will post any progress of treatment (and lawsuit) as things progress.   
right now specs i think are
type 1A Genotype 1
Viral load  over 4 million
Stage 2 fibrosis   
   

[OrlandoSun]

   Took First Pill Today around noon,  was planning on same time each day (dinner time)  but read the side effects list and it mentions allergic reactions like Hives, I figure its better to know during the day if any allergy s to it.  Got  Harvoni (not generic)   looks pink or orange ish.   Posting here because I don't want to post this on my Facebook page, thats another topic probably "should everyone know your personal business?".
Its weird having a bottle of pills worth $30K
Glad to be given the CURE for $10 (plus my Insurance Premium)

[FutureThinker]

EXCELLENT NEWS, ORLANDOSUN!!!!!!!!!!!! I remember well how excited/scared/hopeful/grateful I was taking that first Harvoni. And yes, unbelievable what that bottle costs!!!!!  Truly unreal. I still kinda can't believe I've already gone thru those 3 months of treatment, they were so uneventful! Hope your's is, too.

None of us is considered "cured" until at least 12 weeks after treatment ends and we still test undetected.  Most people seem to relapse, if they are going to, between weeks 4 and 12 post-treatment, so that is where I am at -- hopefully & patiently waiting for the BIG lab test in August for that milestone.

One of the other members, J.R., started a thread in the "On treatment" category titled something like "Boarding the Harvoni Train in the Morning", so you could continue your journey on that thread.  We were able to get ~ 5 of us conversing on that thread while we were all on treatment, it was so supportive and really helped get thru all the anxiety most of us have during that time.

I wish you all the best on your journey to SVR, and remember to drink a lot of water!! Keep us posted -- your future is bright!! FT

[Coach Mike]

Happy for you OS!!
Getting it out of the insurer's hands is the key. Curing HCV is a medical necessity.
Price for treatment should not be a consideration in a perfect world.
Ours in far from perfect.
You will be cured. Your insurer will bump everyone's premiums up a bit their next fiscal year and Big Pharmaceuticals will get their blood money.
Our US medical system at its best!
The main thing: You Get Well!
cm

[OrlandoSun]

Update on my treatment:
Tested Negative , Undetectable at 4 weeks treatment .  From about 4million to zero in 4 weeks,  great cure we have here.   take that HCV Germs, die, die , die. 
14 pills left.   
Also some good news for denial victims, a few class action lawsuits  were settled
and Blue cross of FL will cover all that need Harvoni.  Settle date is OCT 7th

[Coach Mike]

Get well in an affordable manner:
help@fixhepc.com
It works...
m

[FutureThinker]

OrlandoSun, that is FANTASTIC news, both on your UD status and the BC of FL settlement!!!!  Yay!!!!  We need more decisions like this to expand this miracle treatment to all who need it -- be it generic or brand name meds.  All the best to you, FT