There was not a whole lot of information about African Americans and triple tx when I started, because the drugs were just approved. I did 6 months of triple with VIC and just found out I am still UND, one month later. I am hoping that will provide some encouragement, as -- if the data you come across is more abundant in the MAJORITY, it does not really matter if you are in the MINORITY Since I do understand the reason for that, I wanted to document my journey in hopes of helping others with similar backgrounds. I came across an article that lists some good reasons for African Americans to consider treatment. And with the all orals tx in the future, it is definitely worth considering. I tried to find more but my focus/concentration is still a struggle right now (and I am also grieving).
Here is part of what it says:
Can you explain what HCV is and how one contracts it?
HCV is a disease caused by a virus that infects the liver. Essentially, the liver kills itself. In time, it can lead to permanent liver damage as well as cirrhosis, liver cancer and liver failure.
People who are at risk are people who received blood transfusions before 1992 (because labs were not checking for HCV in the blood before then), people who have gotten stuck with infected needles, intravenous drug users who share infected needles, and people who have received piercings and tattoos with used needles that are infected.
This basically is not a sexually transmitted disease, unless there is blood involved. You don't get it by kissing or breathing. It's generally a blood-to-blood illness, but if it's not specially checked for, it's not picked up. That doesn't mean that damage isn't occurring.
Why have African Americans had such little success with past HCV therapies?
Genetics. People who have good configurations of [a gene called] IL28B have a higher chance of being cured of HCV when on therapy. And what we have found is that African Americans were most likely to have bad configurations of IL28B, so even when they adhered to the therapy and did everything right, the treatment was less likely to be successful.
But when Victrelis was added to the existing therapies, even the people who had bad configurations had a better chance of being cured than without Victrelis. This is why this is such great news for the African-American community.
Thanks for this. I did not know that the new PI's sort of leveled the playing field, as it were for those who may possibly not have the "good configuration" of the IL28B gene. Still, if I don't clear the virus on Triple Therapy I am going to be tested.
As the huge number of US vets infected during the Vietnam era from airjet innoculations is almost always ignored on all web sites when listing those at risk, I'd like to add the following:
The VA Testimony before the Subcommittee on Benefits Committee on Veterans’ Affairs, U.S. House of Representatives, April 13, 2000, Gary A. Roselle, M. D., Program Director for Infectious Diseases, Veterans Health Administration, Department of Veterans Affairs, state, "One in 10 US Veterans are infected with HCV", a rate 5 times greater than the 1.8% infection rate of the general population."
One in 5 of these Veterans are from the Vietnam era.
Hi. Good to hear from you again and hear that you are still undetectable!
I am very sorry to hear that you are grieving and wish you strength during this difficult time.
It is great for you to be spreading the word about treatment and how the new hepatitis C treatments have made a positive impact on the African American community.
I can tell you that here in Northern California we members of the "California Transplant Donor Network" are making concerted efforts to reach out to the African American community as well as other communities that are underrepresented in other parts of the health system, to let them know that transplantation is available to those in need. Many of these communities have unique issues that need to be focused on in order to spread the word that there is help available. We have pamphlets and brochures that address particular issues with communities from the historical distrust of the US medical system due to Tuskegee experiments and other incidences of medical apartheid. We also have pamphlets in a variety of Asian languages and hope to overcome some of the stigma around hepatitis B. which chronically infects 10% of the Asian population here in California.
As with hepatitis C, hepatitis B in the Asian community is a taboo subject and the city of San Francisco and the northern California Transplant Donor Network is trying to bring the subject to a point of conversation so that Asian will get tested and if need be treated for hepatitis B before they develop liver cancer which is one of the most common cancers among this community.
"In California alone liver cancer is the #1 leading cause of cancer deaths among Laotian American men, the 2nd leading cause of cancer deaths among Cambodian and Vietnamese men, the 4th leading cause of cancer deaths among Chinese and Korean men, and the 5th leading cause of deaths among Filipino men."
I encourage you to keep up the good work and spreading the word.
I hope to hear your 3 month viral load as being undetectable!
I hope people dont get discouraged by the statistics that are out there~ I put off treating myself, for years, because SOC was only saying "50%" chance of cure(I'm caucasian)for genotype 1a. I waited for the PI's to come out.
The thing is, none of us really knows, until we try, how our bodies will react to these meds. So, I'm kind of glad I didn't know what my IL28B marker was...if it had told me I was a "TT" marker, it would've discouraged me, I think.
The best we can do, is educate the public. I would love to see a giant Hep C walk, or run, just like they do, for HIV or Breast Cancer. Hep C is killing people much faster than HIV now...we should have mandatory testing for Hep C!
I am sorry that you are grieving but so happy you are UND one month post. Even though you are hurting and coming off the meds here you are helping others. You are a special lady with great strength even though you may not feel like it right now. Thank you. I hope to see you SVR.
Dear Bee my thoughts are with you. I am so very happy that you are UND one month out, some place on here I remember someone posting some statistics regarding UND and how your chance at SVR goes up every week you are UND
Wishing you the very best
Thank you, thank you. This forum has taught me about the dialogue that needs to happen/be ongoing on a bigger scale.
Boce -- I love your idea of a run! (NYgirl7 -- if you're out there, maybe you could call up Steven Tyler :)
OHawk -- Thank you very much for this information. I greatly appreciate this inclusion
Hector -- You are my role model for giving back. With all of the secrecy and stigma surrounding this disease (and so many others), we do need to be the voice. And with the new drugs and much better statistics, it is so important that people with Hep C who chose not to treat in the past, re-consider doing so in the future.
I never expected to become an advocate on this journey. But I am so happy I documented everything so I could hopefully help someone else. Can't remember if I mentioned it but one of my nurses even asked if I would speak at a support group (I told her yes). Hector -- I thought of you right away and how you are sharing not just your story but help and encouragement and the facts about Hepatitis.
God bless us all! Thank you all for your SVR wishes :) I wish you all the same.
It's great to find a Hep C thread specifically for African-Americans. I haven't found much info out there. I just began my journey a week ago. I am on Riba and Interferon at the moment will be starting Victrelis in a few weeks. I am still anxious about this whole thing. I believe I have read too much about the SVR rate in African-Americans -- which is making me think twice about this treatment. End the end I just want to make sure it was worth it. Anyway sorry for the rant but if anyone has any tips on how to get through this that would be great! Like I said I am only a week in. Tx's okay so far...worst are when I take the shot. Again this is just week 1, my second shot is on Tuesday morning.
I read somewhere, or heard it on the webcast (one or the other), that the NIH had great results with 7977+Riba trials for African Americans. I do know that the NIH trial was for 24 weeks.
I would encourage any AA's to check this out!
Good luck with your Victrelis. It's Protease Inhibitor, and works equally well, on all races. The thing is, to take it exactly every 8 hrs, on the dot, so set your alarm, I took the pills at 6:30 am, 2:30 pm, and 10:30 pm.
Also, always make sure that your Meds are going to arrive, a week before you run out. That way, if there is any kind of error with delivery, you will have plenty of time to correct it, without ever having a gap. The reason for this is our bodies can build up a tolerance to the Victrelis, if it's not taken regularly like this. Good luck!
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