I am very frustrated as my hepatologist will not prescribe the new Nash drug Rezdiffra for me. I had biopsy 3 years ago and was F3 S1Nash. My fibroscan was low F3 S2. She said since I am stable and slightly improved it is not urgent for the drug and I should wait 1 year for another Fibroscan. I feel I have already lost 30 lbs, gained 6 lbs back and the new drug would possibly reverse my Nash 1 stage. Has anyone elses doctor not want to give them this new drug?
Thank you!
f
Hi Kathiy
Interesting question. I don't agree with the doc and I wonder if the decision is based on the practice's financial structure. Hard to know if you are truly stable. The Fibroscan suggests that your liver is fatter but the margin of error with Fibroscan is large enough that it is hard to know for sure. I'll ask our contact at Madrigal if they can provide any guidance in this situation. They won't over rule a doctor but may offer some perspective. I'll let you know if I get anything useful. If it were me I would see if I could get a second opinion. The argument is that F3 carries a significant risk of early mortality so it is not benign even if conceptually stable.
Thank you for your reply Wayne. I see my gastroenterologist in August so I thought I would ask his opinion. My other thought is I don't know if I could afford it through Madrigal as they told me unless the doctor prescribed it they cannot answer if I would qualify for financial help. I did find out from medicare they do not cover it.
Hi Kaithiy
Could you provide me with the name and location of your doc? I'm working with the Madrigal team and they would like to try to provide some additional information to that hepatologist about the prescribing guidelines and the need to treat.
Hi Wayne,
I appreciate your efforts but I am reluctant to give out my doctors name and practice. They are the only nearby hepatologists and in past they have talked about dismissing me back to family doctor as they mainly handle cirrhosis patients. I do not think Madrigal will change her mind on not prescribing for me as she seemed to have attitude when discussing the drug. I also am reluctant to travel and get a second opinion before I know what the drug would cost me. Do you have any idea if Madrigal is working on getting Medicare approval?
Thanks again
Kathy
Fair enough, your gastro can prescribe if interested in managing your care. Madrigal is working on Medicare but the feds move slowly. They do have programs to support people financially so costs could be worked out without committing to the treatment I imagine. They say that they want everyone who needs the drug to get it even if they have to give it away, when you know more let me know if i can help
Thank you for your help!!
Just read your exchanges with Wayne and your situation. Wayne is the best and I hope you get the drug as your liver could benefit greatly. Many of us are in similar boats floating nearby yours. Imagine an Armada of small boats. Collectively our voices matter. I need to now stop sitting on my hands and advocate against the regime. In my case it’s Kaiser Permanente. feel it’s my fault that I don’t have a gastro doctor or ever seen a hematologist. Oh yes my fatty liver with inflammation was confirmed via biopsy in 1986. Had my first Fibroscan a couple years ago. Was told by my primary that I am S0-S1 stage with a diagnosis of NASH. She will refer me to Hepatologist if and when my condition becomes Critical. That of course won’t be necessary at that point. My father died at 61 in 1981. His liver was cirrohtic per emergency gall bladder surgery in 1965. Autopsy confirmed what we now call NASH. Sorry for this being so long, but I haven’t posted here in a couple years. Your post and Wayne’s should remind all of us we need to pick up our oars and paddle harder!
Best Wishes,
Troutwhisperer
Thank you for your reply. I am still in shock I can't get the drug. Any other time docs are pushing meds. My hepatologist last portal reply was my case is not urgent and she ignored all my requests for the drug and said she will do a fibroscan in a year. I also cannot comprehend why she is stating my fibroscan cap score of 296 is stage 1 for Nash as everywhere I research it is stage 3. The fibrosis score was 9.4 where 10 is F3. All I know to do is discuss with my gastroenterologist in August and see if he will prescribe it but that will mean cutting off the hepatologist which is only one without traveling over 2 hours and would require a referral . Best wishes to you.
If I understand correctly it’s easier & less distance to see your hepatologist than your gastro Dr. Although you’re hoping the gastro Dr. would prescribe it as the hepatologist will not at this time. So what about a video appt. or zoom meeting with your gastro Dr? The goal being to not have to wait until August to see him. At Kaiser Permanente a video appt. seems almost always easier to get and happens much quicker than an in office visit. They even offer phone appointments which again are easier to schedule and happen quicker. I don’t know if either option is available to you. Also, different doctors probably don’t always agree aon a treatment plan. Considering we see disagreement on what a patient needs to do prior to Madrigal’s drug coming to market it’s not surprising that different doctors and specialists might not fully understand a patient’s exact condition. As Wayne suggested there are specialists with different interpretations of what your Fibroscan scores actually mean regarding your degree of scarring and fibrosis. Also I believe there is a margin of error in the accuracy of the test numbers. For myself I am going with my gut and will look for a gastro Dr. willing to help me. If it means further testing to confirm the degree of fibrosis I would not be surprised. I may need a new primary Dr. just to get a referral. So be it. For you it sounds like fibrosis has been confirmed. If you can get your gastro Dr.’s opinion sooner than August that would be my goal. If your gastro Dr. won’t prescribe it I would allow Madrigal &/or the FLF to contact both your specialists. At that point you really have nothing to lose. Doctors are more willing to listen to other professionals than their patients sometimes. Trying to reduce the need to travel and reducing the cost or copay for the drug remain important.
Best Wishes,
Troutwhisperer
Thanks for your input. I have alot to think about! Take care.Kathy
I'm glad to hear they're going to try to make it financially affordable. I believe my doctor will prescribe it for me but I'm worried about the cost because I'm sure my insurance won't cover it.
I have Aetna Medicare and they approved it for me . The copay is 100.00 and the company is working on a copay for me . The problem I’m having is actually getting the medication.
Reversing NASH/Fibrosis
How to survive with NASH stage 3
I am new...I would like to know the meaning of my results...
Metformin to TREAT NASH
NASH & Bariatric Surgery
