Hepatitis C isn't really the kind of condition what is referred to as being positive. I mean maybe it was a long time ago. It just sounds odd to hear that expression in relation to HCV. So much has changed since 1997.
How would Gilead be able to offer assistance without knowing your Genotype?
Either way now might be a good time to go back to the beginning and get genotyped and find out your viral load. It seems like there are some pieces of the story missing.
☞ What was the basis for only having 2 to 5 years to live? If you were told that in 1997 you have obviously disproven that prediction
☞ What stage of fibrosis are you? ☚
Your depression is controlled so I am not sure if you would encounter problems when you treat. On the other hand we do not know your genotype but since you are treating with newer meds depression might not be as big of an issue. Still it would help to know your genotype since there are could be a few possibilities of the meds you might take.
I went on an AD (anti depressant) prior to treatment since I was concerned about depression and in my case it helped tremendously. Plus, the support on here was phenomenal. I treated 48 weeks and I do not know how I would have made it if it weren't for the forum.
Depression ended up not being the issue as much as being scared and feeling isolated since no one in my personal life really understood what I was going through.
I think the more you learn about the virus and the meds the less vulnerable you will feel and the more confident you will feel about treatment and your ability to handle whatever comes your way. If you were diagnosed in 1997 now might be a good time to think about treating (if you need to) since LOTS has changed as far as the meds are concerned. They are way less harsh and treatment durations are shorter. Still, it would be helpful to know your genotype before anything more concrete can be said.
Welcome to the forum.
I agree with Idyllic that there are some pieces missing from your medical history and some of it is not clear.
It is not clear what is meant by "positive." Are you sure you have Chronic Hepatitis C or do you just have the antibodies (which are referred to as being positive of negative).
If you do have Hepatitis C, then you do need to be Genotyped and you do need to find out what your current viral load is. You will also need other baseline testing and you will need to find out what stage of liver fibrosis you have.
I would recommend finding a Hepatologist at a large university affiliated medical center. He/she will be up to date on the most current treatments. There are several new treatments out and more to come in the next few months, so you want to treat with a doctor who is knowledgeable and competent.
I don't know why the doctors would be refusing Hepatitis C treatment for people with Depression. Interferon can cause Depression but you won't be using Interferon. There are Interferon free treatments available. Even with Interferon treatments, the doctors treated people with Depression unless they were very unstable or suicidal. I have a long history of Depression and I treated in 2011-2012 for 48 weeks with Interferon, Ribavirin, and Incivek. I did fine. I was already on an antidepressant prior to treatment and I had absolutely no problems with Depression during treatment. I am now off the antidepressant and doing fine. I am also cured of Hep C. But, bottom line, the new treatments are Interferon free so you would not be on Interferon.
I would just keep looking for a doctor who will treat you. And, as I said, I would get a Hepatologist at a large university affiliated medical center. Surely there must be a Hepatologist in Dallas who will treat you.
Wishing you the best.
"Has anyone encountered this particular situation? "
In the past when all treatments used interferon someone having a history of clinical depression was commonly put on antidepressants before starting treatment to avoid treatment induced depression.
Fortunately there are now interferon-free treatments for all common genotypes so people don't have to deal with the many possible side effects caused by the use of interferon to treat hepatitis C. For this reason and many others involving effectiveness and safety interferon is phased out so no one needs to ever treat with such a toxic drug again.
Many of us have treated with interferon and are glad never have to treat with it again.
SIDE EFFECTS: Flu-like symptoms (e.g., fever, chills, muscle aches, fatigue, headache, joint pain, nausea, stomach pain, cough) may occur. If instructed to do so, you may take pain/fever-reducing medications (e.g., acetaminophen, ibuprofen) to help with these symptoms. Dry mouth, loss of appetite, weight loss, trouble sleeping, diarrhea, dry skin, or redness/swelling at the injection site may also occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly.Tooth and gum problems may sometimes occur during treatment. Having a dry mouth can worsen this side effect. Prevent dry mouth by drinking plenty of water or using a saliva substitute. Brush your teeth well at least twice a day and have regular dental exams. If you experience vomiting during treatment, rinse your mouth afterwards to lessen the chance of tooth and gum problems.Temporary hair loss may occur. Normal hair growth should return after treatment has ended.Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.Tell your doctor right away if you have any serious side effects, including: persistent sore throat or fever, easy or unusual bleeding/bruising, unusually severe fatigue, unusually slow/fast/pounding heartbeat, severe stomach pain with nausea/vomiting, black/tarry stools, vomit that looks like coffee grounds, yellowing eyes or skin, dark urine, increased thirst/urination, bloody diarrhea, numbness/tingling of arms/legs.Get medical help right away if any of these rare but very serious side effects occur: chest pain, vision changes (such as blurred vision, partial loss of vision), seizures, one-sided weakness.This drug may cause you to develop serious mental/mood changes that may get worse during treatment or after your last dose. Tell your doctor right away if you have symptoms such as confusion, depression, suicidal thoughts, unusual irritability, or aggressive behavior. If this occurs, psychiatric therapy and monitoring is recommended during and after treatment with this medication.A very serious allergic reaction to this drug is unlikely, but get medical help right away if it occurs. Symptoms of a serious allergic reaction may include: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist.In the US -Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
So a history of clinical depression is no longer a contraindication to getting treatment for hepatitis C.
There are many very good doctors (hepatologists and gastroenterologists) in the Dallas area who are educated and experienced in the latest interferon free treatments. I would suggest finding one of these doctors and steering clear of the other ignorant lot who still think depression and hep C treatment is an issue or don't know that there is treatments for clinical depression as well.
Good luck treating your hepatitis C.
We had a thead on the forum that listed good Hepatologists and GIs. Here is what one of our members said about her doctor in Dallas:
"I will add Dr Abdullah Mubarak of the Liver Institute at Methodist Hospital in Dallas. The Liver Institute is a transplant center and he is a hepatologist. I have been under his care for this treatment with the PIs. "
So you could try getting an appt. with Dr. Mubarek at the Liver Institute at Methodist Hospital in Dallas.
Hello, just wanted to tell you that my history of mild depression was a reason for me to treat with Solvaldi and Olysio. I am 1A and with depression you do not have to treat with the older treatments that tend to have depression as side effect because it could make your depression worse. So I think it was a good thing to get my treatment with the least side effects and my info was sent to the drug companies to verify the reason for treatment with the newer treatments. A Doctor should never tell you to get your affairs in order with the new medicines out to treat hep c now. I think you should look for another doctor that might have a better bedside manner.
I have not experienced this myself, but on one of the threads onthos Forum someone said how to get a letter from your Psychr or psycho for you Hep Dr to send as justification for using the 'newer' meds - anf that was not even for the ones coming out in late Fall/early winter.
Please look through the old threads to see if you can find it----or maybe someone with that experience will post it again here.
I agree with all above, you need a new, really good specialist.
Hope this helps! DON'T believe that doctor! Hang in ther and keep on keeping on!!! Treatment is too close to defeating this dragon forever. Pat
That might have been me with the letter because I got a letter from my phycologist that I have had a history of depression and my doc sent that in with her prescription for the Olysio and Solvaldi. She felt that with the history of depression it could possibly reactivate it again. The physcolgist also said he felt I could withstand the treatment at this time. But in no way is depression a reason not to treat. Could you possibly get another doctors opinion? I do not think yours may be up with the current treatments for hep c.
I also spoke with Gilead because I could not find a doctor to give me a prescription for Sovaldi and Olysio and Gilead is not able to help you without a prescription from a doctor and a denial from insurance.
I moved from Oklahoma to Oregon for better health care. Sadly, I chose the wrong state but that is another story. :)
Anyway, in Norman and Oklahoma City none of the private doctors would treat 1a patients except for one group who had a 6-month wait list just to see a doctor. So, I went to the medical centers and saw a couple of specialists who were willing to give me treatment right away. The point is that I am sure if you go to one of the medical centers in Texas they will give you treatment with the new more friendly drugs that do not normally cause depression or make it worse. Actually, my depression has helped me to not have to take Interferon. Good luck and take care.
Thanks for all the help. I apologize if I was not clear. I was tested for the antibodies after having slightly elevated liver enzymes on my blood work. This was in 1997. As I said, the doctor delivered the news in such a cold way (you guys well know the stigma) I found another doctor who I've been seeing for 20 years. He did further testing several times. Yes, I have chronic hepatitis C, not just the antibodies. My doctor is a GP. I went to a GI to have genotyping done; however, the doctor I went to wanted to do a biopsy. My GP did not want a biopsy. He was concerned about excessive blood loss. I was working out of the country and had to go back. I was never genotyped. Maybe it would help to tell you that my GP takes a very conservative approach. He didn't push for treatment then. He didn't think the drugs at the time, 1997-98 were working for many people. He wanted to wait and see. Now, with the new Sovaldi combination drugs and my AST and ALT rising, he is recommending treatment. So, since I never got that initial genotype, I'm starting at square one.
So, Gilead has started a file for me. They need a genotype, viral load, and a prescription. When I say my depression is controlled, I mean with meds and therapy. I've also reached out to my family, which I've never done, to build a support system. I hope that fills in some blanks.
Some really great information here. Thank you, The Methodist Liver Institute is my next step. Happy to hear some good news about them.
The best of luck to all of you sharing this journey.
Hi again. Just wanted to note that I don't have insurance. I had great insurance in Europe; however, I was there for so long that I lost work credits and don't qualify for insurance through Affordable (really?) health care, nor do I qualify for medicaid or subsidies. No insurance company will cover me. I've been told that after November, insurance companies can no longer ask if you have a pre-existing condition nor can they charge you more if you do. We'll see. This is why I was directed to Gilead and support path. If you don't qualify for medicaid and have no insurance, they can cover the expense of Sovaldi treatment, 12 or 24 weeks. Since the treatment is so costly, around $84,000, this is the only option I have.
That's great, Rubye-Jack! Especially since the insurance companies want to put you on the cheapest tier drug they offer, basically, the old interferon treatment.
I was thinking that if you had further (confirmatory) testing for Hepatitis C I believe it would necessarily yield a viral load. Maybe there is a set of labs floating around to see.
Either way it sounds like now might be a good time to encourage you to obtain all copies of your medical records and labs. Most GPs no matter how adept (s)he might be in other areas of family practice or even internal medicine does not have the level of experience and insight to determine your suitability for treatment based on such scant information. Double especially if this is the same doctor who told you you had 2 to 5 years to live. (!!!)
Yes there is a risk with a biopsy or just about any invasive procedure but there are other noninvasive ways (Fibrosure or Fibroscan) to measure what stage of liver disease you are in addition to how far you have progressed since 1997. I could be going overboard a little here since it seems fewer and fewer people obtain this info the better the meds get. If it were me I would want to know what stage of liver disease I am. (Like I said though, that's me)
Even though there are better meds available to treat with I think having your depression well managed is important since (I think) treating in one way or another can be a strain. Granted it sounds like less of a strain the better the meds are but I still see having Hepatitis C and treatment as a life changing experience. I mean HCV is a progressive potentially life threatening disease after all.
I encourage you to have an HCV-PCR with Genotyping
I am unclear who would follow you once you obtain a prescription for the HCV meds. Depending on the combination of meds you receive there might be side effects which are best managed by a doctor trained in liver disease meaning a Hepatologist or a Gastroenterologist. In addition there are labs that must be administered at certain intervals. Labs that in some cases (depending on the meds) that determine treatment duration. Or labs that reveal how well and to what extent you are responding to the meds.
I appreciate not following through with the one Gastro you did see since many of us are not (or did not) treating with the very first Gastro or Hepa we saw. Maybe the Gastro you saw will have access to a Fibrosure or Fibroscan. Or maybe that Gastro could offer a referral to another Gastro. Which brings up one other thing: Not all Gastros have experience in treating Hepatitis C. I wonder if Gilead would release meds to a non-liver practitioner. I may be going to far since I have no idea about this part.
As far as the first doctor, the one who said I had 2 to 5 years to live, I never saw him again. I have noticed that if doctors don't know the answer, they will guess at it. Not all docs, of course. This guy was particularly vile. He kept looking at my arms to see if I had track marks. He made me feel like a leper. I hope none of you have had this type of experience, but I'm sure some have. To hear the diagnosis alone is devastating enough. Yes, I will be making an appointment with Methodist Liver Institute. I have heard of the alternatives to liver biopsy. I have to keep the cost of testing as low as I can. Basically, I can afford the minimum amount of testing needed. I will also be paying for follow-ups out of pocket. Thanks Idyllic.
You can ask the Methodist Liver Institute if they have a sliding scale for services or if they offer some type of financial assistance for people without insurance or people who are in your situation. Many places do offer financial assistance to people who need it. Several on this forum have been treated for free due to financial constraints or no insurance.
Wow I am sorry you had such an awful experience with a doctor like that!
Lots of people on here have had the exact same experience you had. I wish I could tell you it was rare but it isn't.
Unfortunately there are people with misconceptions about Hepatitis C. Even in medicine. There might be times you find yourself having to explain about Hepatitis C to people who you would think would be educated to know.
I wish you the best in finding a doctor to oversee your treatment. You were wise to be sure you had assistance for the funding since that is turning out to be a major hurdle for people who are willing and able to treat.
I hope you continue to post as there are people on here who really know how to navigate the system and interpret medical results who can help guide you prior and during treatment. This is not something to go through alone
Poo and Idyllic. I'll continue to post. I'll share all information that might help someone else.
I'm so happy to find this forum. Poo, do you live in Texas? Any information on sliding scale or help with testing, follow-ups would be greatly appreciated.
No, I do not live in Texas but I know several people on the forum do live in Texas.
I just looked at the Liver Institutes website and they do have financial assistance. You will need to check with them to determine how you fit into their assistance program. At their website, go to the Patients and Visitors tab, and then pick Billing and Financial Assistance. I would also call them and schedule an interview (or however they do it) to determine what you may be eligible for.
Hope this helps.
Provides a one-stop site for patient assistance programs and other discount opportunities for a variety of pharmaceuticals.
Also has a very useful database to find free and low-cost medical clinics.
Patient Access Network Foundation
Has an HCV-specific program, and can offer up to $7,000 in financial assistance for eligible individuals.
Patient Advocate Foundation
Has an HCV-specific program, and can offer up to $7,500 in co-pay assistance for eligible individuals.
Provides a single site for all patient assistance program applications for both HIV and HCV medications.
Good luck with your treatment!
Hi Rubye_Jack. You posted "I also spoke with Gilead because I could not find a doctor to give me a prescription for Sovaldi and Olysio and Gilead is not able to help you without a prescription from a doctor and a denial from insurance."
What if you have no insurance? This is my case. I can only say that I cannot obtain insurance due to Hep C.
You guys, I hope you are all fighting this with all you have and keeping positive. It's hard! My heart goes out to all of you.
I have something I would like to ask you all about. I'm scheduled to see a gastroenterologist next Thursday to get the genotype and viral load and other tests that he wants. I'm working with Gilead.
I received some blood and urine tests today. Looks like a train wreck. Calculated globulin: H 4.2. Total bilirubin: H 1.5. AST: H 257, ALT H, 228 (these are always high). Neutrophils: L 39. Platelet count: L 135. Two abnormal on urinalysis. Leukocyte esterase: *14. Ketones: *Trace. I can't find a reference for the asterisks. Glucose is up to 118. It was 82 3 months ago. I've been told they don't look at diabetes until it hits 120.
With all of these abnormal values, even though 1 or 2 points within normal range, I wonder. I was fasting.
Do any of you have similar results? I know many people have only elevated liver enzymes. I had only elevated AST and ALT for the longest time, and I was diagnosed in 1997. But wow, it looks bleak.
I know there are new Solvaldi drugs coming out. I don't know if I should wait. After November 15, insurance carriers cannot ask about pre-existing conditions. The insurance might actually be affordable. I do wonder about Gilead's help after November 15. I feel like I'm in a time crunch. I don't have the immune system to go through tier drugs that insurance companies offer before they will consider Sovalidi.
If any of you have experience with all the abnormal tests or Gilead or both, please let me know.
It will get better. WE will get better one way or another. All of you are in my thoughts and intentions.
See my post to you in the thread "Which-Way-To-Go".
I hope that you have been able to make an appointment to see a hep specialist at the Methodist Liver Institute. If things don't work out there for any reason, there are other good liver hospitals in your area.
People have found that the best way to get the proper hep-c treatment is at a hepatology department in a large hospital. Failing that, though, there is the alternative of seeing a hep MD privately. All you need for patient assistance from the pharmaceutical companies is an MD and a specialty pharmacy, for a prescription and to help you through the assistance application process.
Some private hep MDs will take you on for a reduced fee. I found one in NYC, the most expensive place in the U.S. for medicine, who charges me only $100 for office visits.
If you can manage to get Sovaldi and Olysio, the 12 week treatment period does not really require much testing. If you are paying out-of-pocket for tests, you can get by with three CBCs (with differential and a few other things added) and as few as one viral load test (at 12 weeks post-end of treatment).
You can fax test results to the MD, and if nothing weird shows up on any of the CBCs during therapy you shouldn't have to go in for a doctor's visit. After you complete therapy you will either be cured (SVR) or not, so one VL at 12 weeks following treatment is enough. If you can get an MD to prescribe and give you test orders, and a lab that will give you a fee reduction, you might be able to do the whole thing for around $1,100. Breakdown:
- Three doctor's visits: $300.
- Three CBCs/+: $300 (there are places you can get these tests done for less).
- One VL: $500 (from Labcorp, which by the way has its own financial assistance program).
You can add on a VL at 8 weeks, to see how it's going, and/or one at 12 weeks to see if you are SVR at the end of treatment, but only the one at 12 weeks after the end of treatment is conclusive (although some are doing VLs at 24- and even 48-weeks post EOT for safety). And these tests are expensive for an illusory peace of mind (some people do relapse).
So, you see that you have alternatives.
Thanks for all the information. For those who have used The Liver Institute at Methodist Dallas and had a positive experience, I'm glad. After speaking to Dr. Abdullah Mubarak's office several times, I told them to shred the records they had received from my GP. They (his staff) are incredibly rude and absolutely no help at all. I was told that Dr. Mubarak would have to look at my records and decide if he would treat me and if he decided to, I could make an appointment. This is the "protocol." Okay, what is the criteria? What would make me ineligible for his services? They don't know-it's just the protocol. It seems they absolutely do not want to work with a cash pay patient.
Also of note, I called the Institute when they were doing Sovaldi trials. I would be responsible for paying the doctor visits and lab tests. Really? To my knowledge, that's not how trials are run.
I found Dr. Amjad N. Awan here in Lewisville. On his website, he specializes in chronic hepatitis C. He is not a hepatologist, he's a gastroenterologist. His staff is knowledgeable and helpful. His nurse quoted $356 for viral load, $200 for genotyping, $180 for the initial visit. The total, with CBC and other blood work would be about $1,185. This doesn't include follow up visits and blood work.
His nurse assured me that he would work with me on the Sovaldi and Gilead. I have a few very specific questions that I'm asking in the first five minutes and if he can't answer those, I'm walking.
By the way, I called Gilead, again, on Friday and according to two people I spoke with, you choose your own doctor. They have no list or network of doctors that you have to see.
I'm moving to Hot Springs, Arkansas on November 21. So, kind of in a time crunch with a lot going on. I'll have to find another doctor for follow-up Eeesh!
I had the same experience at Baptist Integris in OKC, and I had no insurance at that time but was being sent there by Indian Health. They told me I would have to wait until my case was prioritized because they were giving the more sick priority. I have no had this problem since I got Medicare, but most hepatologists have a wait list of 3-6 months to get in to see them. The only hepatologists in Arkansas are in Little Rock at the medical center and I think there are a couple of gastros in Ft. Smith. Also, Baptist Integris in OKC is not that far away. I used to drive 3 hours to get there.
Are you able to obtain insurance under ACA? (Obama Care)
Oh, you mean "affordable" healthcare? ;-). No, I don't qualify for the insurance or the subsidies. I don't qualify for Medicare, Medicaid, VA benefits-nothing.
Yes, I was fairly sure I'd have to look for a doc in Little Rock. I'm glad you are able to get Medicare.
Very sorry to learn of your bad experience at Houston. Thye people there sound like jerks.
Regarding trials, you are absolutely correct. No trial subjects should have to pay for anything. If someone is takling money from trial patients they should be reported to the government and the trial sponsor.
I hope you have better luck with the MD in Lewisville. That sounds like a good deal, with people who will help you. If not, try again in Arkansas. You have to keep trying. I've been at it every single day for five months (actually, for years), and still don't have things set up so I can start Tx.
We both need a little good luck for a change.