Husband Diagnosed with HepC-No Insurance Low Income

[erikaallday]

My husband was diagnosed with HepC almost a year ago, we had Health Insurance then and are now without it for the first time ever due to a job change. He was diagnosed by a high enzyme level result from a routine workup done by his regular physician which prompted him to do the full range of testing for diagnosis of HepC. We saw a specialist who basically said he needed to do alot more tests but that from the levels presented to him from the original testing, his levels did not make him believe that he would need to immediately start the treatment but that we needed more testing, a biopsy, and most importantly the HepB vaccine. NONE of that has been done as we lost our insurance right after that and since my husband is not experiencing physical symptoms he seems to be pretending this isn't happening. However, the mental toll it is taking on him is unbearable in ways to myself and our friends and family who all recognize this huge change in many aspects of his personality, and mostly that he acts like the future is non-existent, So many behavioral changes have come about that our marriage is suffering to an extreme level and just our life in general, especially his. He's the most amazing man and father and just a guy everyone loves to be around his whole life and now he holds nothing dear and has this attitude of not caring about anything.

I desperately need help finding help to get the remaining tests, biopises, and most worrisome to me, the HepB vaccine, He is very willing and aware of the need for all of this and he fully admits that it's of the most importance right now, but I think he feels so desperate not having medical insurance (especially since we always have in the past) with the state of our finances being so desperate right now, that he has his mind set that there's no way he can get it done so he just ignores it unless I bring it up and then he always agrees with me that we have to figure something out, he just doesn't know how.  I have not worked in 3 years as we have had 2 new babies in the past 2 years back to back, so along with our 7 year old and one income, he seems to be pretending it isn't happening. And I am literally scared to death!!!  

Please give me any info you may know of on what assistance I should apply for or where to go to get the vaccines at a lower price (they were prescribed but with no insurance the cost was $470 for each one). I have read lots of info on help with meds and treatment from the drug companies but we are not there yet, we still need preliminary test done to fully know where we stand with this disease and what course of treatment is necessary.  

Thank you in advance for any time any of you are willing to give to me and my family in answering these questions, I am genuinely lost on this and I need this to happen for my husband, he needs to feel hopeful again and know that this is by no means a death sentence and that there is help out there for us, Thanks again so much!

[kickthemstones]

You should be able to get the vaccines free at your local health department. They can hopefully provide you with other resources to help. Not sure what Medicaid says about pre-existing but it could be worth a shot. Best of luck to your family!!!

[Advocate1955]

Definitely the vaccines are a high priority (Hep A, Hep B) and even HIV testing would be high on my list.  He does not want to have any co-infections along with Hep C, which will complicate his health and his treatment.  I wonder if the state health department has those vaccines and tests available at a low cost or free to low income patients?  As far as his current mental outlook, I would agree that how he is responding is fairly normal, or at least it is similar to how my husband responded when he first learned of his diagnosis.  He was scared that he would die and leave me and the children alone without sufficient resources.  He was scared that he may have infected us.  Your husband may be feeling similar things.  He may also be angry at himself for his past risky behavior that led him to his current health problems and/or angry at himself for not being able to provide an income and health insurance for you and the children.  I believe that knowledge is power, so if you begin the process of educating yourself about Hep C, its progression, treatment options, support systems, etc., and then gradually begin sharing that information with him, he will become more empowered regarding his own health and health care.  Figuring out how to get some kind of health insurance would be very important.  My husband and I also made sure that he had a health care directive and I had durable power of attorney, and whenever we had opportunities to increase our life insurance policies and add supplemental health care coverage, we did so, to make sure that if anything happened to one of us, the other could pay off the mortgage and take care of our children's needs.
Advocate1955

[jules2551]

Hi Erika...welcome to the forum.  I would call the old Dr and get copies of all of the tests that were run.  You have the right to do so they are yours!  I just wonder if they ran the Hep A, B, and HIV tests along with the Hep C test.  (on my original test with Hep C they only ran Hep B and HIV...I don't know why they didn't run Hep A.  They ran at a later date and it was Neg).  Once you know that,  find a free clinic who offers those vaccines at a low cost.  Then you can start your journey with the pharma companies and possibly getting involved with a trial in which the majority of expenses are paid for.  There are a ton of trial patients on this forum so pick their brains.  Believe me, they know the "ins' and "outs".  Good luck to you!!!

Jules

[HectorSF]

I am sorry to hear about the bind you are in. My best advice is to try to calm down and learn more about hepatitis C and you will realize you are overreacting to the diagnosis of hepatitis C. Hepatitis C is a curable disease. It can be cured in up to 80% of patients. The most effective treatments ever are available now and there are new ones with less side effects that will be available in the next few years.

"most worrisome to me, the HepB vaccine". Why? The cost? There are many clinics that provide hep B vaccine for free at least for in San Francisco. If you can't get it free or at low cost from the manufacturer look to community clinics or hospitals in a large city near where you live.

Imaging and a biopsy can be many of thousands of dollars. Even blood tests can be hundreds if not a couple of thousand dollars depending on what tests are performed. While biopsies are many thousands of dollars, not everyone needs a biopsy.

This is a great lesson for all with hepatitis and liver disease. If you have health insurance through an employer you should never let your insurance lapse. You have the right to continue your same insurance for for at least 18 months after you get laid off or quit but you must pay the full cost including the portion your company was paying. If you let your insurance lapse for one day or you may never be able to get health insurance at a reasonable cost again, as you are now in the category of having a "per-existing" condition.

If you are lucky you can find private insurance but they will make you pay an arm and a leg to have it. As we all know hepatitis C diagnosis and treatment can be very expensive. Advanced liver disease is many things more expensive than that.

Best of luck to you both! Don't give up. Be persistent and you will find help out there.
Hector

[can-do-man]

Well 43 is not very old, theres many older geesers on here. Not me of course.:) Its great he doesn't drink and really never has as that can be one of the worse things, sounds like he grew up faster then alot of people, again not me of course.:)

Is there any way to get his past records? Might contain alot of info and save on some testing... BTW welcome to the zoo.

[erikaallday]

Well.....we are fairly young, well I am! haha My husband is 43 years old and he has led anything but a healthy lifestyle.  We are in the casino business and he very much led the party lifestyle for almost 20 years. He lives a fairly healthy lifestyle now-no drug use- but certainly doesn't eat as healthy as he should, smokes, but doesn't drink at all and never really has, maybe a few drinks here and there on occassions but never consistently.  He did however, spend many years dabbling with cocaine-many years ago- and was addicted to pain pills for about 7 years.  He has been drug free for about 5 years now. The doctor did say that it appears from one of the test results that his liver seems to be in better shape than it should be with a lifestyle like he's had but I honestly can't remember which test that info came from or the genotype specifics he discussed with us, at the one appointment we had with him as so much info and medical jargon was thrown at us we left there more confused than when we arrived-which is why I am feeling so desperate to get into whatever testing needs to be completed to tell us where we stand.
Thanks so much for your response, I am feeling very encouraged by the people on this forum and feel sure I will be an active member throughout this journey!

[can-do-man]

Should add that once you know what his geno type is you can check into what trials there our out there, that would cover all your cost, including doctor and more then likely a biopsy.

Oh yeah, the way your husband is reacting is pretty much normal, been there done that.

[hrsepwrguy]

Welcome to the forum, this is a great place for support, lots of knowledgable and treatment savy people here more than willing to help whenever possible.

[can-do-man]

I agree with hrsepwrguy, this would be a great way to start. When he first found out did they test to see what genotype he has? That there would be the best way to start...... I kinda take it that your both a young couple? If so the odds are very good his liver is not to far gone. Alot of people have had this 30 plus years and still have mininal damage.... With a healthy life style i would guess hes got many many good years ahead of him....... Hang in there, best to you and your family.

[erikaallday]

thank you so much!  I am new here, well to anything related to this topic, and I am feeling so encouraged by the genuine users on this forum.  I feel very blessed to have stumbled up you all!!

[hrsepwrguy]

Go to your local hospital or a teaching hospital if there is one in your area and apply for help through the financial assistance office they might be able to help getting the required testing and shots needed. Then from there you can apply for the treatment meds through the pharma co's and possibly get them for free if you qualify. Hope that helps