Aa
I am So Disheartened and Saddened
I posted a question to Sarah in the thread that Dee posted regarding the article on whether doctors have lost their power to prescribe the treatment that they feel is best for their patient. I don't have any issue with how anyone feels about whether it is a good thing or a bad thing. It's good more people will get treatment. It's bad that doctors have lost some of their ability to practice medicine. But, what really hurts is the statement " The system, from the doctors to advocacy groups to insurance and the government, has been dirty all along....."
As someone who has been an advocate since the early 90's, I have had the privilege to work with and get to know all of these hardworking, compassionate and caring people. I remember sitting in the first HCV Consensus Conference at the National Instititues of Health in the 1990's. Those advocates fought tooth and nail to allow people in recovery to get treated and participate in clinical trials. We didn't stop until the "powers that be" listened. And for many of us it wasn't easy to sit there for 2 days....we were sick, on treatment, and just plain exhausted. But we did it for the welfare of everyone with hep C. We fought for the disenfrachised and we won many a battle for them. Is the system perfect? No, but it is far better today than it was in the beginning. And that is because some hep C patients put themselves out there no matter how crappy they felt....and they are still doing that today.
We marched on Washington in those early days. Although we laughingly called it a "crawl" amongst us patient advocates, as almost no one had the stamina to really walk. We knocked on doors in the Senate and the House and begged Senators and Congressmen to help us. We did everything we knew how to do. It was all grassroots and none of us knew how to do what we were doing, but we did it.
Today, our toll-free support lines have improved and have become more than just "an ear" for some frightened patients. We have so many more resources that weren't available in those early days.
I could go on, but it makes me sad to know that there are unappreciative sentiments out there. I'm not looking for a pat on my back, but there are many people out there who well deserve kudos for all they do.
As someone who has been an advocate since the early 90's, I have had the privilege to work with and get to know all of these hardworking, compassionate and caring people. I remember sitting in the first HCV Consensus Conference at the National Instititues of Health in the 1990's. Those advocates fought tooth and nail to allow people in recovery to get treated and participate in clinical trials. We didn't stop until the "powers that be" listened. And for many of us it wasn't easy to sit there for 2 days....we were sick, on treatment, and just plain exhausted. But we did it for the welfare of everyone with hep C. We fought for the disenfrachised and we won many a battle for them. Is the system perfect? No, but it is far better today than it was in the beginning. And that is because some hep C patients put themselves out there no matter how crappy they felt....and they are still doing that today.
We marched on Washington in those early days. Although we laughingly called it a "crawl" amongst us patient advocates, as almost no one had the stamina to really walk. We knocked on doors in the Senate and the House and begged Senators and Congressmen to help us. We did everything we knew how to do. It was all grassroots and none of us knew how to do what we were doing, but we did it.
Today, our toll-free support lines have improved and have become more than just "an ear" for some frightened patients. We have so many more resources that weren't available in those early days.
I could go on, but it makes me sad to know that there are unappreciative sentiments out there. I'm not looking for a pat on my back, but there are many people out there who well deserve kudos for all they do.
I think this is what "Sarah1949" was concerned about. People who rely on government assistance.
http://www.sacbee.com/news/politics-government/article7058828.html
http://www.sacbee.com/news/politics-government/article7058828.html
Thanks for your advocacy Mom
I run a nonprofit and I know how challenging the work can be - but quite rewarding as well
I laughed at this - "We marched on Washington in those early days. Although we laughingly called it a "crawl" amongst us patient advocates, as almost no one had the stamina to really walk." because I have been there, done that during the AIDS pandemic
Please bear with us - we are sick, tired and cranky
If it were not for people like you and Hector, we would still be in the dark ages about Hep C, the pharm companies wouldn't be focused on a cure and we would not have these incredible new treatments!
I run a nonprofit and I know how challenging the work can be - but quite rewarding as well
I laughed at this - "We marched on Washington in those early days. Although we laughingly called it a "crawl" amongst us patient advocates, as almost no one had the stamina to really walk." because I have been there, done that during the AIDS pandemic
Please bear with us - we are sick, tired and cranky
If it were not for people like you and Hector, we would still be in the dark ages about Hep C, the pharm companies wouldn't be focused on a cure and we would not have these incredible new treatments!
Thank you for your kind words but there are much more deserving people who should hear those words, than I.
Sarah, your question is fair but very difficult to answer. The Fair Pricing Coalition is a bunch of individuals from various advocacy organizations who are hammering away at the Pharmaceutical companies to make better deals with the Pharmacy Benefit Managers and other payors. Each individual State has its own policies regarding Medicaid and they often don't follow the policies of the pharmacy benefit managers. So working with them is certainly not simple. And, there is one in each State. So, it is time consuming as well. FPC website: www.fairpricingcoalition.org.
That is where the bulk of the work is going on right now. Then there are toll-free resource/support lines like Help4Hep, where patients can call and counselors have a data base where they can find resources that may be available to a particular patient depending on where they live and whether they have any insurance or not. We keep these data bases as up-to-date as possible. Of course we send people to the patient assistance programs that are provided by the pharma companies and walk them through the process. Our counselors have been known to actually make calls on behalf of patients to get them financial aid and any other kind of support they may need. We have successfully gotten patients funding through the Patient Access Network Foundation and Patient Advocate Foundation. While you may know about these places because you are an active member of this discussion community the majority of patients are unaware that these organizations even exist. We also recommend free and low cost clinics in their area.
One of the things that I have done myself, is to talk to a couple of the pharmas about doing some clinical trials in methadone and bupenephrine clinics for patients who are under-insured. We've done this in Hartford, CT and Akron, OH. Hopefully others are following suit.
I hope this gives you some idea what is going on to try and be a voice for every patient who needs help.
Sarah, your question is fair but very difficult to answer. The Fair Pricing Coalition is a bunch of individuals from various advocacy organizations who are hammering away at the Pharmaceutical companies to make better deals with the Pharmacy Benefit Managers and other payors. Each individual State has its own policies regarding Medicaid and they often don't follow the policies of the pharmacy benefit managers. So working with them is certainly not simple. And, there is one in each State. So, it is time consuming as well. FPC website: www.fairpricingcoalition.org.
That is where the bulk of the work is going on right now. Then there are toll-free resource/support lines like Help4Hep, where patients can call and counselors have a data base where they can find resources that may be available to a particular patient depending on where they live and whether they have any insurance or not. We keep these data bases as up-to-date as possible. Of course we send people to the patient assistance programs that are provided by the pharma companies and walk them through the process. Our counselors have been known to actually make calls on behalf of patients to get them financial aid and any other kind of support they may need. We have successfully gotten patients funding through the Patient Access Network Foundation and Patient Advocate Foundation. While you may know about these places because you are an active member of this discussion community the majority of patients are unaware that these organizations even exist. We also recommend free and low cost clinics in their area.
One of the things that I have done myself, is to talk to a couple of the pharmas about doing some clinical trials in methadone and bupenephrine clinics for patients who are under-insured. We've done this in Hartford, CT and Akron, OH. Hopefully others are following suit.
I hope this gives you some idea what is going on to try and be a voice for every patient who needs help.
please accept my heartfelt thank you for all you an everyone involved have done on behalf of all Hep C patients. Because of the push to make aware this virus and better treatment options made available, countless people I'm sure are being cured an saved from the horrible progression of this virus.. Thank God for everyone involved ... Mary
I also appreciate everything that you and others have sacrificed to help all of us. You've paved the way for the current Txs that are now saving so many lives. Thank you for all you've accomplished thru perseverance and faith.
....Kim
....Kim
Don't get me wrong. I appreciate the individuals with good intentions even when I have no idea what those individuals are doing to help patients. I would love to know what you guys are doing to help people on Medicaid gain treatment. If I knew what is being done, I might be appreciative.
Have an Answer?
You are reading content posted in the Hepatitis Social Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
