Just Denied Treatment for my Hep C....Now What do I do!

[chem_chic]

I was diagnosed May of this year. I have stage 2 fibrosis, a viral load of 16,800,000 with a Genotype 1a, but all my other blood tests are normal with no HIV infection. BCBS says I am not sick enough for treatment. I am tired all day. My body aches constantly. Today my legs hurt so bad I could barely walk. I have difficulty concentrating (a lot!). I have to push myself just to work my job and take care of normal living tasks.

My MD prescribed Harvoni and warned me I might be denied and I was. My MD is not going to appeal because he tells me there is no point that I need to wait until BSBC changes their rules. I'm sorry but I do not accept this! I do not think that waiting until I have liver damage that is forever or worse yet cancer, until I am allowed to be treated is the right course of action. Plus I do not believe that BCBS are going to volunteer to do the right thing any time soon. What can I do to get treated besides getting sicker?

CAN ANYONE GIVE ME AN OUTLINE OF HOW BEST TO WORD A LETTER?

Update: Tried to get a new Hep C Doc. All the locals are from the same office. This area is so overwhelmed by Hep C, most can not accept new patients, those that can have a wait of 4 months for an appointment. This is so crazy. We need to get people meds and cure them.

[Philadelphia]

This thread in the Considering Treatment section deals with the same questions:
http://forums.hepmag.com/index.php?topic=3641.0

See if there's anything useful to you there. I'm in Australia, so our systems are very different, sorry I can't be of more use. Lots of people here have been through the same thing though.

[chem_chic]

Thank you I'm willing to do whatever I have to to get treated.

[beto]

Chem-chic,

Decide right now you are going to fight these insurance bureaucrats tooth and nail.  If your doctor will not fight and stand up for you, get another...I'm serious, a doc who does not stand up for you does not deserve your business.  Appeal, appeal, appeal!!! Find a big pharmacy like Walgreens and get through to their Hep-C division and tell them how sick you are and how high your VL is...pharmacies want the business and Harvoni is "big" business.  They know a few tricks.   Craft a strong letter and send it to everyone you can think of including, Gilead, Patient Advocate foundation, your pharmacy, the press...etc.  Never relent. 

I had cirrhosis and started and 4th appeal before I got my way.  If you are symptomatic, you deserve Harvoni A-sap.  F-2 is a red flag.  You will get it...just keep at em.  I am so sick of these denials   Everybody infected should have access to cure...period!!!

[Lynn K]

Do you have express scripts for prescription meds?

I have BCBS and Express scripts they are a PBM (pharmacy benefits manager) and they hold the keys. You could try to contact them by sending your member# & contact info to ExpressRxHelp@express-scripts.com

Were you offered the alternative medicine of Viekira Pak? It is a bit more complicated to take (more pills at different times of the day) and will also mean you will need to take ribavirin along with it because you are GT 1a.

Express Scripts has Viekira pak as their preferred treatment due to deals they have made with the drug manufacturer.

Anyway don't give up! Others here have filled successful appeals and were able to get treated. They know more than me about that end of it.

Wishing you the best
Lynn

[chem_chic]

My MD told me they use a private pharmacy and did not tell me the name or where it is located. I was not offered an alternative as yet. He said we would discuss it in 6 months. He told me I could be denied then too. I will not give up. Any tips that anyone has would be appreciated. Thank you Beto and Lynn. Hopefully we will all be well.

[beto]

chem-chic

Questions;  Is your MD a Gastroenterologist, a hepatologist, an infectious disease specialist, or a General Practitioner?  It matters in certain situations, because Hepatologists and Infectious disease specialist (and Gastros, some of the time) have more experience in finding ways around or helping to push through, denials.  I don't mean to pick on your physician, but he seems to be just rolling over.  If my doctor told me to wait 6 months and then expect another refusal, I would find someone who has been successful in that arena.

My doc is a GP, but a great guy and fought along with me.  I'm sure your guy has his reasons to be negative, but it is your health.  There are folks with less advanced Hep C than you, that are getting the meds.  Yes, I would try to find someone at your specialty Pharmacy with a sympathetic ear.  It may take a lot of phone calls.  You might ask your doc to just write you a script and then take it to another regular pharmacy.  Most big pharmacies have a specialty wing...if you can get hold of someone there you could get free advice if nothing else.  I did that and ended up getting a person at Walgreens to give me advice and fight for me to get the meds.  I ended up with my insurance company's specialty pharmacy in the end, but I am sure that element was part of what motivated the insurance (specialty Pharm) to get off the proverbial pot.

No corporate entity wants to be seen as the bad guy.  Anyway, I expect someone else from this forum to chime in with better and more conventional approaches to this.  My point, if nothing else is to just, "not take no for an answer."  Which I believe is your mindset. 

I expect to see a near future post from you claiming "you got the meds!!"  Hang in there and peruse this forum, as there has been a lot of good info over the past year that could be helpful to you.  We should not have to go through this, however, the reality is that most will have to fight.  Half the battle is getting the powers that be to see us as people...real actual people and not statistics, or insureds or an entry on a piece of paper beginning with our last name comma.

[chem_chic]

MD is a Gastroenterologist and was not my first choice he was my third choice. Oh I will be doing whatever I can to get my meds. We should not have to jump through hoops to get well. This is just the beginning and I'm very angry about how we are being treated. I just accepted a new job after losing my job to mexico so I am paying a huge premium since I am still on COBRA until 90 day probation period is finished. Yep for a policy that refuses me vital medication! An there is a stipulation with the new job that no one can work for them with an infectious disease. Isn't that illegal? So hopefully I can get a cure before they find out. Stay tuned

Thank you for posting. Well wishes encouragement and information is all welcome and hopefully we will be better soon.

[Lynn K]

Hi chem chic

What line of work are you in and are you in the U.S.?

Yeah most here have felt the same frustration. I have F4 cirrhosis and was initially denied by express scripts when I was prescribed Sovaldi and Olysio for 12 weeks then relapsed. Then when my doctor prescribed Harvoni I was initially denied again until I found that email address and plead my case got Harvoni for 24 weeks and then we later added ribavirin for 15 of those week.

I hate express scripts but they grudgingly did save my life so I thank them for that.


From the CDC FAA for the public about hep c

Hepatitis C and Employment
Should a person infected with the Hepatitis C virus be restricted from working in certain jobs or settings?
CDC's recommendations for prevention and control of the Hepatitis C virus infection state that people should not be excluded from work, school, play, child care, or other settings because they have Hepatitis C. There is no evidence that people can get Hepatitis C from food handlers, teachers, or other service providers without blood-to-blood contact.

Another article

http://www.hepatitiscentral.com/news/disclosing-hep-c-status-in-the-workplace/

Two Common Fears
Besides the stigma surrounding injection drug use, there are a handful of fears that others may have of working with someone infected with Hepatitis C. While most of these are unfounded, others may have merit. The two most likely fears coworkers or employers have are:

Fear of Contagion – There is a great deal of misinformation about how you contract the Hepatitis C virus. For example, those who work in the food service industry may incorrectly believe that Hepatitis C can be passed through food, or those sharing an office cubicle may incorrectly believe that Hepatitis C can be shared by casual contact. For the record, Hepatitis C is only transmissible via blood-to-blood contact.

Fear of Reduced Performance – Depending on the person’s health and if they are in treatment, this fear may or may not be justified. Fatigue, memory problems, nausea and cloudy thinking are common in those with advanced infection and/or those receiving Hepatitis C therapy. However, many people with Hepatitis C are asymptomatic and their job performance is not impacted by their illness.


Good luck

[chem_chic]

Hi Lynn,

I work in the pet food industry in the lab. Previous to that Medical devices. I went through paperwork last week and found a clause (that I do not think I was supposed to see) that stated that no one with an infectious disease should be considered for employment. This statement just rattled me to the bone because the pay scale is so much higher than any other job I have been offered in almost a decade. I'm never going to say anything because I am not a threat to their safety. Though I will be difficult to hide that something is a miss. Only good thing is I can blame Menopause since I am 52.    I fatigue easily, I am feverish all the time. My average temp is about 99.5. Plus body aches and GI distress it has not been fun.

[Lynn K]

Really pet food? Our illnesses for the most part aren't even transmissible to animals!

Anyway if you can work in food service to humans or as a doctor or nurse for people I am pretty confident the pets don't have any worries. But I think whoever wrote that rule needs to go back to college and take a science class.

Your employer does not have need of this information from you.

I have treated many times previously and also recently as I said 57 with cirrhosis missed no time from work due to treatment but I am just an old Army gal just lace up my boots and keep on trucking

Hope you find a way through the red tape soon

[chem_chic]

Really pet food? Our illnesses for the most part aren't even transmissible to animals!

Anyway if you can work in food service to humans or as a doctor or nurse for people I am pretty confident the pets don't have any worries. But I think whoever wrote that rule needs to go back to college and take a science class.

Your employer does not have need of this information from you.

I have treated many times previously and also recently as I said 57 with cirrhosis missed no time from work due to treatment but I am just an old Army gal just lace up my boots and keep on trucking

Hope you find a way through the red tape soon

Thank you Lynn. Fear makes people stupid. I understand not wanting to encounter a disease like Hep C but most people are not at risk. Lucky for me neither job knows about my condition. Pennsylvania is a right to work state, meaning they can get rid of you for any reason.   

[gnatcatcher]

chem_chic, between your high viral load and the other severely limiting symptoms you have mentioned, you have the makings of a very strong letter documenting that you are much sicker than the typical F2 and should therefore be treated NOW.

I'm also wondering which test staged your fibrosis as F2. As you can see from my sig file, results can vary quite a bit depending on the type of test. My hepatologist's office was smart enough to test me two ways and to send my insurer the FibroScan F4 rather than the FibroSure F2.

Good luck!

Gnatty

[Lynn K]

ok looking under Pennsylvania

http://www.pacode.com/secure/data/034/chapter130/s130.1.html

I am not understanding the intent but there it is

But based on this I think it is related to workman's comp for those who contract hep c while in various jobs where there is a danger of transmission

http://www.iaff.org/hs/phi/state/pennsylvania.asp?callingPage=Cancer

This below is an interesting read

https://safety.blr.com/workplace-safety-news/employee-health/employee-health/Contagious-Disease-in-the-Workplace-What-You-Can-D/


Here is another quote from the Hepatitis central link I sent before

The ADA

The Americans with Disabilities Act (ADA) may offer someone with Hepatitis C some degree of legal protection against discrimination in the workplace. Some states offer greater protection than the ADA.

    Employers in the United States with 15 or more employees are required to comply with the ADA.
    The ADA protects “qualified individuals with disabilities.”
    The ADA describes disability as a physical or mental impairment that substantially limits one or more of the major life activities of an individual.
     A disability cannot be measured solely on the ability to do certain tasks at work, but must also be permanent or long lasting.
    A person with a disability designation is entitled to protection from any practices in the workplace that could affect wages, benefits, application procedures, job assignments, promotions, etc.
    Having Hepatitis C does not automatically entitle someone to these benefits.
    You cannot be terminated from employment solely because of Hepatitis C status.
    The ADA does not provide protections for those who cannot work due to a disability.
    ADA assists people who can work, but may need some extra consideration in performing their duties so that they may continue to work. Some reasonable accommodations that might be appropriate are time off for doctors’ appointments, providing additional unpaid leave or job restructuring, and granting a flexible work schedule.
    There is nothing in the ADA law that prohibits an employer from terminating your employment if you do not perform your job, even if it is a disability that prevents you from doing so.
    Other laws, such as the Family and Medical Leave Act (FMLA) and COBRA/OBRA provide help for those who are permanently disabled.

And restating for emphasis from above
"You cannot be terminated from employment solely because of Hepatitis C status."

But if not comfortable I would keep it on the DL and just go with don't ask, don't tell.

But the article also said:

"Being directly asked about Hepatitis C status in an interview is rare, but possible. Although this may not seem fair, some employers ask questions like this during the interview process. It is legal for them to ask as long as they ask this of every potential employee. It pays to be honest here, because lying can legitimize firing."

[chem_chic]

chem_chic, between your high viral load and the other severely limiting symptoms you have mentioned, you have the makings of a very strong letter documenting that you are much sicker than the typical F2 and should therefore be treated NOW.

I'm also wondering which test staged your fibrosis as F2. As you can see from my sig file, results can vary quite a bit depending on the type of test. My hepatologist's office was smart enough to test me two ways and to send my insurer the FibroScan F4 rather than the FibroSure F2.

Good luck!

Gnatty

They used something called a FibroSpect II. They scanned me for quite awhile and I was scanned by a trainee with a supervisor. They also found beign cyst. And yep I thought for sure my VL would have gotten me meds but you know what I heard "I have seen higher" that people with very low VL can have higher damage.

[chem_chic]

ok looking under Pennsylvania

http://www.pacode.com/secure/data/034/chapter130/s130.1.html

I am not understanding the intent but there it is

But based on this I think it is related to workman's comp for those who contract hep c while in various jobs where there is a danger of transmission

http://www.iaff.org/hs/phi/state/pennsylvania.asp?callingPage=Cancer

This below is an interesting read

https://safety.blr.com/workplace-safety-news/employee-health/employee-health/Contagious-Disease-in-the-Workplace-What-You-Can-D/


Here is another quote from the Hepatitis central link I sent before

The ADA

The Americans with Disabilities Act (ADA) may offer someone with Hepatitis C some degree of legal protection against discrimination in the workplace. Some states offer greater protection than the ADA.

    Employers in the United States with 15 or more employees are required to comply with the ADA.
    The ADA protects “qualified individuals with disabilities.”
    The ADA describes disability as a physical or mental impairment that substantially limits one or more of the major life activities of an individual.
     A disability cannot be measured solely on the ability to do certain tasks at work, but must also be permanent or long lasting.
    A person with a disability designation is entitled to protection from any practices in the workplace that could affect wages, benefits, application procedures, job assignments, promotions, etc.
    Having Hepatitis C does not automatically entitle someone to these benefits.
    You cannot be terminated from employment solely because of Hepatitis C status.
    The ADA does not provide protections for those who cannot work due to a disability.
    ADA assists people who can work, but may need some extra consideration in performing their duties so that they may continue to work. Some reasonable accommodations that might be appropriate are time off for doctors’ appointments, providing additional unpaid leave or job restructuring, and granting a flexible work schedule.
    There is nothing in the ADA law that prohibits an employer from terminating your employment if you do not perform your job, even if it is a disability that prevents you from doing so.
    Other laws, such as the Family and Medical Leave Act (FMLA) and COBRA/OBRA provide help for those who are permanently disabled.

And restating for emphasis from above
"You cannot be terminated from employment solely because of Hepatitis C status."

But if not comfortable I would keep it on the DL and just go with don't ask, don't tell.

But the article also said:

"Being directly asked about Hepatitis C status in an interview is rare, but possible. Although this may not seem fair, some employers ask questions like this during the interview process. It is legal for them to ask as long as they ask this of every potential employee. It pays to be honest here, because lying can legitimize firing."

Every Pennsylvania employer always makes sure you know about the right to fire law. They never fire for the real reason. They transfer you to a position that they know you will fail at. Then when you do poorly they document this and then they have cause that does not look like discrimination. I have seen this tactic many times.

[beto]

chem-chic

Is there no one at your job that you trust enough to discuss this with? 

Glad Gnatty and LynnK piped up.  Ask your doctor for a script for a fibroscan.  This is quickly becoming the test of choice for liver stiffness.  I payed out of pocket the first time 350.00.  Gnatty's got a great point...if the fibro scan shows a bit more issue, you can use that score.  As lynn said, call your insurance and ask for the denial paperwork.

If you contest it and get another denial, do it again. 

[chem_chic]

chem-chic

Is there no one at your job that you trust enough to discuss this with? 

Glad Gnatty and LynnK piped up.  Ask your doctor for a script for a fibroscan.  This is quickly becoming the test of choice for liver stiffness.  I payed out of pocket the first time 350.00.  Gnatty's got a great point...if the fibro scan shows a bit more issue, you can use that score.  As lynn said, call your insurance and ask for the denial paperwork.

If you contest it and get another denial, do it again.

Oh trust me, learned long time ago the squeeky wheel gets the grease. So it is time to squeek loud!!! 

[Lynn K]

Well yes of course there are evil people out there but you do have rights.

Hope you never need to but there are lawyers who specialize in the sort of thing.

Any employer who conducts business in this manner risks being sued and having to pay that employee lost wages and punitive damages as well. Nothing like being paid for life for wrongful termination.

[beto]

Atta girl chem-chic!!!

Hehe.   Let us know if you need a picket line.  You got all us happy heppers in a row.  One thing we have all learned...that is how to fight.  Lynn and Gnatty have some stories on fighting through hard times...you sound pretty tough yourself. 

[gnatcatcher]

chem-chic, last night on another thread moderator Lucinda Porter posted the links to three organizations that can help you get treatment: ". . . Patient Advocate Foundation http://www.patientadvocate.org/ or Patient Access Network http://www.panfoundation.org/ or the Bonnie Morgan Foundation for Hep C http://www.notwithoutafight.org/. . . ."

BTW, I didn't have a hard time getting or taking Harvoni. What beto is referring to in my case is that I have had a wide variety of medical "adventures" which have included other major diagnoses. That's why I have gotten so good at "firing" doctors (not going back to the paternalists and mediocrities if I have alternatives, which it sounds like you may not have, since your gastro was your third choice).

Squeak away!

Gnatty

P.S. If you could use a laugh, the forum software came up with a magnificent set of spelling options for chem-chic: chimeric, chemurgy, Chumash, shamanic, Chomsky.