Aa
Is anybody going to mind if I vent on here?
I have a lot to say and it's complicated. I've tried to help others on here by sharing my experience and Radiology expertise, but it's time to share more and say a few things and even assign some blame (won't change anything, I know) but you'd be surprised at how even another Dr. is left to wither on the Vine.
I'd probably get to it Friday or over the w/e, but I wanted to make sure I wouldn't offend anyone if I let it all hang out.
Robo
I'd probably get to it Friday or over the w/e, but I wanted to make sure I wouldn't offend anyone if I let it all hang out.
Robo
Best Answer
I checked two textbooks that I think are good references and there is no mention of any possibility of contagiousness of Hepatitis C or B from humans to dogs. I also checked an online database -- and was reminded that monkeys can harbor hepatitis B-- but no mention of dogs. I can't say for certain it doesn't occur based on this but it seems pretty unlikely.
Dr.M. Richards DMV
There is no risk of transmission of hepatitis between dogs and people. The form that dogs can get is completely different from the human version (Hepatitis B or C). Fortunately, canine viral hepatitis has largely been eliminated due to excellent vaccination coverage and the stability of the organism involved. It does not mutate the way canine parvovirus does, or for example, human influenza virus does.
Dr.M. Richards DMV
There is no risk of transmission of hepatitis between dogs and people. The form that dogs can get is completely different from the human version (Hepatitis B or C). Fortunately, canine viral hepatitis has largely been eliminated due to excellent vaccination coverage and the stability of the organism involved. It does not mutate the way canine parvovirus does, or for example, human influenza virus does.
Did U know Dogs get a Hepatitis? I recentally found this out from my vet"
I'm pretty sure we were always told that no they could NOT get hepc. I got both of my kids tested but not my dog.
I'm pretty sure we were always told that no they could NOT get hepc. I got both of my kids tested but not my dog.
Thank you for the information, it certainly can't hurt...to write a letter
if only Hector..Magnum, Robo and more....could do this ...thanks willing.
One action item that might be well worth considering is a collective open letter to members of the FDA panel and main drug co execs (see opening pages of the transcript for names) from members of this forum that clearly meet the "high need" criterion (eg documented cirrhosis and history of prior tx failure: Robo, Hector, Joe, Magnum, etc.) requesting at a minimum (1) regular, public update on progress of the initative (2) direct involvement of patients at need.
The real cost of endless waiting needs to be made part of this decision process, as things stand it's not a relevant factor
if only Hector..Magnum, Robo and more....could do this ...thanks willing.
One action item that might be well worth considering is a collective open letter to members of the FDA panel and main drug co execs (see opening pages of the transcript for names) from members of this forum that clearly meet the "high need" criterion (eg documented cirrhosis and history of prior tx failure: Robo, Hector, Joe, Magnum, etc.) requesting at a minimum (1) regular, public update on progress of the initative (2) direct involvement of patients at need.
The real cost of endless waiting needs to be made part of this decision process, as things stand it's not a relevant factor
You, your story, and your life are inspiring to me.. I wish you the best of luck! :o)
The ways and means that have brought you to this point are so complex and cut so deep, I can only admire your ability to rise above the circumstances and persevere in spite of the difficult lot you've drawn. The double-edged sword of advancing medicine has left people like yourself in the 'orphan pool' with few resources and little support or advocacy. It's heartbreaking that the very possible benefits being explored exclude those who need it most. The forward thrust in improving clotting factor has tragically left many behind in its wake, and my hope is that the cure for hcv is accessible to you soon for this to be put far behind you. Best wishes in your continued movement forward.
Above all, you are Humbling, Heroic, and Humane. ~eureka
Above all, you are Humbling, Heroic, and Humane. ~eureka
Oh Boy , aint that the crap. We all probally have other problem besides hep c. like smoking, bad people in our lives, jobs, kids etc. Our other problems can probally be changed somehow, someday. It looks like your stuck with the crap you were born with. Im soo sorry you got all three h's. *****. Im not the most learned about medicine on this forum. But I was thinking that people who have gone through treatment often develope animia. also not a doctor but I would think that would be especially hard on you., I wish I could break into some treating hospitol and steal what ever you desire to be treated with. It seems to me I read they have even treated people with hep c and hiv and mental instability and of course a current drug habbit @ a few local meth-a-don clinics. I looked at clinical trials and none of the studies include 3 h's . Ive also read they give people experimental meds to people who R so bad they have nothing to loose. Thank god you are not there yet. I assume that since you are in the medical profession (radio- olgy) you are educating yourself with as much info as you can learn. I believe you may also have easier access to some great minds (doctors) and 1 doctor knows another doctor, who knows another doctor. I can not help but hope for you that there really is a way to do what you want. I have always said and it is my motto "Where there is a will there is away" I realize these drug companies want to look good, so they pick the best canadaits for their studies. But I would think they should be able to keep your results out of the scores. and someone should be willing to let you try what ever is out there. Do you see anything out there you would be willing to try? There is talk which I am sure you are aware of which talks about replacing ribo and interferion all together. I hope it comes soon for you. Out here where I live we really do go to vet to get what we need. heres a few examples. First let me say I do not know those vetrinarians nor do I conduct business with them. Those vets all died or went elsewhere to follow the money trail. one girls ear didnt make earwax , she knew what she needed but couldnt afford doc bill. her vet gave her a script for ear drops, free of charge, another girls hubby couldnt move his hands or arms from working on a god awlfull hard job at a chicken plant. he couldnt afford a doctors bill. she went to her vet sai her horse had sore leg and got bute. she split the pill for the right weight. her husband felt like a new man and went back to work. I know people who use equine meds for their old age problems like authoritize and they have va benifits. they prefer the horse cure. Did U know Dogs get a Hepatitis? I recentally found this out from my vet. My own hands were swollen and would not move from the chicken plant. so I used DMSO and something else? its on the tip of my tounge. One of those compounds said it makes tumors in uterus or ovaries in lab mice. but I needed to work. so I used it and next day I could move and was better. The Dmso made the other med get into my system as I remember. and on myself as with my horses I wraped in plastic the meds around my body..A person I know couldnt get a licence in one state with out paying 700 bucks to that state. So she called that state and said she had moved far away (hardship to get to the dui schools) she still had to pay the dui fine, but not the 700 bucks and she drove 70 miles into another state and got a licence. What Im trying to relate is once again , if your willing to think outside the relm of society and buro-crats and laws. (we got too dam many of them) There must be away where there is a will. There must so few members of the 3 H club.. So there may be no pharmasuitical companys willing to vest the money for the research. Maybe you could talk to great minds out there and make a plan that may help you. A method of treatment? Taylor made for your conditions. Then have them speak on your behalf and gain you access to what would benifit You. I have not yet read all of your responces to your post. Im sure there are some sugestions that are good. There has gotta be away, but you have alot of work. Atleast you have a really wonderful life, a great job, a wife that loves you and children. and all of them are healthy. God blessed you very much. Later for now ginger.
the format is indeed a bit confusing. From the list of all documents in the docket you can get to the individual items as pdf or ppt files. The last four digits are roughly in chronological order : 0001 is the initial hearing announcement in the Federal Register, 0028 is the (long, 280 pages) full transcript of the hearing, and the rest are slides or pdfs ot individual comments/presentations. Not all submitted comments are on the web site. The three I sent were never posted though they were submitted before the June 25 deadline (need to follow up about that).
This is indeed the group of people, between FDA heads and drug co execs, who can make change happen. The general intent of the initiative is very good however none have any skin in the game and the overall CYA attitude seems to make progress unlikely unless something can change. It's not even about "high risk for high need" as much as "moderate risk for high need versus high risk of inaction" IMHO.
One action item that might be well worth considering is a collective open letter to members of the FDA panel and main drug co execs (see opening pages of the transcript for names) from members of this forum that clearly meet the "high need" criterion (eg documented cirrhosis and history of prior tx failure: Robo, Hector, Joe, Magnum, etc.) requesting at a minimum (1) regular, public update on progress of the initative (2) direct involvement of patients at need.
The real cost of endless waiting needs to be made part of this decision process, as things stand it's not a relevant factor.
This is indeed the group of people, between FDA heads and drug co execs, who can make change happen. The general intent of the initiative is very good however none have any skin in the game and the overall CYA attitude seems to make progress unlikely unless something can change. It's not even about "high risk for high need" as much as "moderate risk for high need versus high risk of inaction" IMHO.
One action item that might be well worth considering is a collective open letter to members of the FDA panel and main drug co execs (see opening pages of the transcript for names) from members of this forum that clearly meet the "high need" criterion (eg documented cirrhosis and history of prior tx failure: Robo, Hector, Joe, Magnum, etc.) requesting at a minimum (1) regular, public update on progress of the initative (2) direct involvement of patients at need.
The real cost of endless waiting needs to be made part of this decision process, as things stand it's not a relevant factor.
Robo, thank you, I feel in my heart it is you and all the
"blood brothers" that have the courage and the strength. You all suffer
daily with many issues . It is you that are fighting the fight for your life.
It is all the people here fighting or waiting to fight HCV.
I've heard of only one class action lawsuit and that
was thrown out of court and nothing more has been done to
my knowledge. No one will go up against the large pharmaceutical
companies, with the exception one law firm in SF they took on many
hemophiliacs. They had solid proof that they were in fact, infected through
blood products via lot numbers. The judge would not rule.
When it comes right down to it...no amount of.money can replace a life
not ever. I did this when my son was still very much alive and healthy.
For him not myself, for what was done was so wrong and the companies
know it, knew it then and know it now. As much as I believe this was
so wrong to give out factor VIII that was contaminated, I also believe
no amount of money in this world is worth a precious life. You can't
take it with you . Just my feelings. I think it would help many families
yes. But in the end what the heck does it matter? once you've lost
a loved one or two or three, and many friends. It's just so heartbreaking
and almost unlivable.
Willing, I had a hard time navigating on that site:( it's most likely me,
I could not find that much on this subject..and yes, I tried:)
I thank you willing, I did find this little bit of info.
Robo, never give up. Like Trinity said, treat with the newer PI's ?
it's worth a try Robo? Even on TX you can still have your HIV status UND
it can be done. I wish you the very best my friend.
I wish everyone here, didn't have to be here....and this was a nightmare.
I love you all
Here is some of what I found on the site willing gave.
Perhaps the most vexing barrier to providing drug access to threatened populations is the lack of a regulatory fabric that encourages pharmaceutical firms to offer such access as part of a reasonable business model. Absent such encouragement pharmaceutical firms are wary of compassionate access because of a heavy downside. Any negative results may greatly retard drug aproval.
A “high risk for high need” justification for drug access may be helpful in this regard. All participating parties in “high risk for high need” protocols, including patients, physicians, pharmaceutical manufacturers, and FDA, would need to sign on to risks. Participants in clinical trials know that any and all developing therapies are accompanied by a substantial likelihood of therapy failure, (for HCV we would consider continued high levels of viremia a treatment failure). But in addition to treatment failure, “high risk for high need” access protocols would include a high potential for serious disease progression. Such protocols therefore would require a new mindset to accept that disease progression was quite likely without therapy. It would be FDA’s responsibility to create guidelines that accept some adverse events based on a recognition that progression is not necessarily therapy related.
We’d like to see greatly expanded testing of multiple new agents. We’d like to see tests which combine ‘best in class’ compounds (ie. those with highest therapeutic ratios acting on different stages of viral metabolism). But, we realize that this may be difficult because drug companies are likely to want to combine their proprietary drugs rather than test combinations which include competitors’ products.
"blood brothers" that have the courage and the strength. You all suffer
daily with many issues . It is you that are fighting the fight for your life.
It is all the people here fighting or waiting to fight HCV.
I've heard of only one class action lawsuit and that
was thrown out of court and nothing more has been done to
my knowledge. No one will go up against the large pharmaceutical
companies, with the exception one law firm in SF they took on many
hemophiliacs. They had solid proof that they were in fact, infected through
blood products via lot numbers. The judge would not rule.
When it comes right down to it...no amount of.money can replace a life
not ever. I did this when my son was still very much alive and healthy.
For him not myself, for what was done was so wrong and the companies
know it, knew it then and know it now. As much as I believe this was
so wrong to give out factor VIII that was contaminated, I also believe
no amount of money in this world is worth a precious life. You can't
take it with you . Just my feelings. I think it would help many families
yes. But in the end what the heck does it matter? once you've lost
a loved one or two or three, and many friends. It's just so heartbreaking
and almost unlivable.
Willing, I had a hard time navigating on that site:( it's most likely me,
I could not find that much on this subject..and yes, I tried:)
I thank you willing, I did find this little bit of info.
Robo, never give up. Like Trinity said, treat with the newer PI's ?
it's worth a try Robo? Even on TX you can still have your HIV status UND
it can be done. I wish you the very best my friend.
I wish everyone here, didn't have to be here....and this was a nightmare.
I love you all
Here is some of what I found on the site willing gave.
Perhaps the most vexing barrier to providing drug access to threatened populations is the lack of a regulatory fabric that encourages pharmaceutical firms to offer such access as part of a reasonable business model. Absent such encouragement pharmaceutical firms are wary of compassionate access because of a heavy downside. Any negative results may greatly retard drug aproval.
A “high risk for high need” justification for drug access may be helpful in this regard. All participating parties in “high risk for high need” protocols, including patients, physicians, pharmaceutical manufacturers, and FDA, would need to sign on to risks. Participants in clinical trials know that any and all developing therapies are accompanied by a substantial likelihood of therapy failure, (for HCV we would consider continued high levels of viremia a treatment failure). But in addition to treatment failure, “high risk for high need” access protocols would include a high potential for serious disease progression. Such protocols therefore would require a new mindset to accept that disease progression was quite likely without therapy. It would be FDA’s responsibility to create guidelines that accept some adverse events based on a recognition that progression is not necessarily therapy related.
We’d like to see greatly expanded testing of multiple new agents. We’d like to see tests which combine ‘best in class’ compounds (ie. those with highest therapeutic ratios acting on different stages of viral metabolism). But, we realize that this may be difficult because drug companies are likely to want to combine their proprietary drugs rather than test combinations which include competitors’ products.
I have a question.....here in Canada, where we received the tainted blood from the U.S. and a decision was made by the parties here responsible at the time not to test the blood for contamination, there was a class action lawsuit that was successful and the government has been paying compensation to those who were infected with tainted blood. Has any such class action lawsuit ever been filed in the U.S. ? My apologies to child24angel as I'm sure I asked this question a very long time ago but I don't recall the particulars of the answer.
Willing....your comment is intriguing. I went to regulations.gov and have yet to pull up the doc you're referring to - curious what it refers to and I'll keep trying. Lack a bit of patience this morning and will try again later on when my patience resurges.
I do understand the need for pure data, which is why Phase I trials are done on healthy persons with no complications to ascertain any risks associated with a drug before proceeding and it goes from there. I also understand the need of the prospective patients that trials are conducted such that the data is reliable and pristine. How many times have we pored over the particulars of a trial to determine if the trial was conducted in such a way that the data can be relied upon?
Having said that....it seems to me that perhaps clinical trials can include a component where folks who are higher risk and have other factors can be trialled in tandem with others and their results simply treated separately rather than included in the main trial data. That there should be a requirement on humanitarian grounds for such things for trials to proceed. That if clinical trials result in drugs that potentially bring great profits, that part of that is also to make those drugs available to those who would normally be excluded from the main trial in a way that doesn't impact the core results and yet allows those who are at greater risk to have access to these drugs. I don't know what kind of waiver such participants would have to sign for the drug companies to go with this however I'm sure something could be worked out.
Robo..... I am amazed at what you have done with your life in the face of such challenges and the kind of character you portray. Thank you for venting and for educating on the Triple H predicament. Not something that comes up here often if ever. Hep C advocacy has it's challenges on it's own and I certainly hope that those challenges are not impeding the success of Triple H Advocacy...but it could be so. I don't know what the answer is but I hope you...and we...find it.
Trish
Willing....your comment is intriguing. I went to regulations.gov and have yet to pull up the doc you're referring to - curious what it refers to and I'll keep trying. Lack a bit of patience this morning and will try again later on when my patience resurges.
I do understand the need for pure data, which is why Phase I trials are done on healthy persons with no complications to ascertain any risks associated with a drug before proceeding and it goes from there. I also understand the need of the prospective patients that trials are conducted such that the data is reliable and pristine. How many times have we pored over the particulars of a trial to determine if the trial was conducted in such a way that the data can be relied upon?
Having said that....it seems to me that perhaps clinical trials can include a component where folks who are higher risk and have other factors can be trialled in tandem with others and their results simply treated separately rather than included in the main trial data. That there should be a requirement on humanitarian grounds for such things for trials to proceed. That if clinical trials result in drugs that potentially bring great profits, that part of that is also to make those drugs available to those who would normally be excluded from the main trial in a way that doesn't impact the core results and yet allows those who are at greater risk to have access to these drugs. I don't know what kind of waiver such participants would have to sign for the drug companies to go with this however I'm sure something could be worked out.
Robo..... I am amazed at what you have done with your life in the face of such challenges and the kind of character you portray. Thank you for venting and for educating on the Triple H predicament. Not something that comes up here often if ever. Hep C advocacy has it's challenges on it's own and I certainly hope that those challenges are not impeding the success of Triple H Advocacy...but it could be so. I don't know what the answer is but I hope you...and we...find it.
Trish
Your outrage is perfectly understandable, this exclusion thing is extremely unfair and someone somewhere should be looking into it.
Just wanted to offer my support and understanding.
Stay well
Just wanted to offer my support and understanding.
Stay well
On a broad level, outrage seems an over-abundant commodity nowadays, or so it looks to me, but I think you have every right to be deeply pissed, if not downright bitter. It's very hard to read about experiences like yours or Joe's or Hector's and not feel that something, and of course its $$$, is standing in the way of life. There is no sound reason why what is now a wide array of DAA drugs "close" to release should not be made available to those most in need. Given the option, how many facing decompensated cirrhosis would choose the "safety" of inaction versus the option of combining multiple DAA drugs that have already demonstrated safety/efficacy beyond phase IIb ?
Anyway, if you haven't already done so, spend some time looking through the 40 documents in the docket of hearing FDA-2010-0107 on regulations.gov. (Paul Brayshaw's comments relate to hcv + bleeding disorders). I had great hopes for this FDA initiative and spent time submitting three comments, but have heard of no follow up action.
Your case is a poster example of urgent justifiable need that might just break the logjam. The full transcript hearing has names of all relevant FDA and drug co players - at a minimum, if you have the energy, make sure they hear your frustration and the human cost of their inaction...
Anyway, if you haven't already done so, spend some time looking through the 40 documents in the docket of hearing FDA-2010-0107 on regulations.gov. (Paul Brayshaw's comments relate to hcv + bleeding disorders). I had great hopes for this FDA initiative and spent time submitting three comments, but have heard of no follow up action.
Your case is a poster example of urgent justifiable need that might just break the logjam. The full transcript hearing has names of all relevant FDA and drug co players - at a minimum, if you have the energy, make sure they hear your frustration and the human cost of their inaction...
Elaine,
I'm so sorry for your losses. I consider them "blood brothers" and feel the loss too. Preventable tragedies in my view. In the end, it doesn't matter how somebody gets hcv. If they have it, they need to get rid of it.
The toughest pill to swallow is the trial exclusions. If you have hemophilia, you're likely to get excluded from trials even coinfection trials, and while you wait to find a less restrictive trial that doesn't exclude you b/c of Hemophila or HIV, your disease progresses to cirrhosis yet another exclusion criterion in many cases. The same cycle repeats but now you get excluded because your liver is too poorly functioning or you develop hcc and are excluded again, then the cycle starts again but they're too late.
There is no monetary compensation. If you offered a stranger 10 million dollars to inject themselves with HIV and HCV I doubt anyone would take it. I'd rather they fund studies for the remaining "triple H" patients then give me money.
Elaine, you're one courageous lady! Think of you often and wish you peace (inner and outer)
R
Co Study,
Since I am a physician, let me give you another perspective.
If you run a pharmaceutical company with a novel hcv drug. Despite proving my extreme will to survive, it's not in your best interest to have me as a data point. Let's say I have a minor bleed completely unrelated to the new hcv druug. Now it's reported, makes it into the literature and then listed as a potential side effect. When you're competing for big bucks against other new hcv drugs, now you have a blemish the other drug doesn't have. It's a financial thing, why not pick the HCV patient who is otherwise the picture of perfect health? NHF, HANY should be jumping up and down or threatening litigation in protest over these exclusions, not rolling over.
Ok, I feel better now.
Thank you all. Will update when I have something worthy. I'll continue to check in from time to time to be supportive and share my expertise.
Bill,
Thanks for the sage advice and continued support.
best,
R
I'm so sorry for your losses. I consider them "blood brothers" and feel the loss too. Preventable tragedies in my view. In the end, it doesn't matter how somebody gets hcv. If they have it, they need to get rid of it.
The toughest pill to swallow is the trial exclusions. If you have hemophilia, you're likely to get excluded from trials even coinfection trials, and while you wait to find a less restrictive trial that doesn't exclude you b/c of Hemophila or HIV, your disease progresses to cirrhosis yet another exclusion criterion in many cases. The same cycle repeats but now you get excluded because your liver is too poorly functioning or you develop hcc and are excluded again, then the cycle starts again but they're too late.
There is no monetary compensation. If you offered a stranger 10 million dollars to inject themselves with HIV and HCV I doubt anyone would take it. I'd rather they fund studies for the remaining "triple H" patients then give me money.
Elaine, you're one courageous lady! Think of you often and wish you peace (inner and outer)
R
Co Study,
Since I am a physician, let me give you another perspective.
If you run a pharmaceutical company with a novel hcv drug. Despite proving my extreme will to survive, it's not in your best interest to have me as a data point. Let's say I have a minor bleed completely unrelated to the new hcv druug. Now it's reported, makes it into the literature and then listed as a potential side effect. When you're competing for big bucks against other new hcv drugs, now you have a blemish the other drug doesn't have. It's a financial thing, why not pick the HCV patient who is otherwise the picture of perfect health? NHF, HANY should be jumping up and down or threatening litigation in protest over these exclusions, not rolling over.
Ok, I feel better now.
Thank you all. Will update when I have something worthy. I'll continue to check in from time to time to be supportive and share my expertise.
Bill,
Thanks for the sage advice and continued support.
best,
R
Your quite a guy, your family and friends are lucky to have you in their life, i truly wish you only the best.
cando
cando
Robo, I know you're not looking for sympathy. I'm much like that myself but I want you to know my heart goes out to you and perhaps you and I will be fortunate enough next year to treat with the PI's and put HCV behind us.
Trinity
Trinity
Hi, the way your post first started I honestly thought it was about one of the doctors that either frequents the board or whose name is known. Actually I rather wish that was the case now.
I can tell by the way you write (I think anyway) that you neither need or want a pitty party. My circumstances are different but I am going to give an example of how many of get the help we desperately need.
We are and have been self employeed for 20 years, 18 years ago I tried like crazy to get food stamps in the winter, we had NO money but we had a building with a huge mortgage, > I did not want their (gov't) money just a litthe help thru the winter with food....NO go, we were self employeed and had property............Number 1
Number 2 was when I got diagnosed with hep C we had just switched to a high deductable ins as we couldn't afford the 1000.00 per month. WE called again for a little medical help, even just with the meds......NO GO again, this time because we had ins and a house we qualified for nada, no med help no nothing and we were told that if I lived on the street, had no job and was a drug addict they would have paid for it all......
AAcckkkk sorry, I know you are not talking about money, it just gets me that thos eof us that need help, whatever kind, are last to gep any kind of help.
If you find any type of programs and need letters or emails I am positive you will get help from here!! You sound like a good guy
I can tell by the way you write (I think anyway) that you neither need or want a pitty party. My circumstances are different but I am going to give an example of how many of get the help we desperately need.
We are and have been self employeed for 20 years, 18 years ago I tried like crazy to get food stamps in the winter, we had NO money but we had a building with a huge mortgage, > I did not want their (gov't) money just a litthe help thru the winter with food....NO go, we were self employeed and had property............Number 1
Number 2 was when I got diagnosed with hep C we had just switched to a high deductable ins as we couldn't afford the 1000.00 per month. WE called again for a little medical help, even just with the meds......NO GO again, this time because we had ins and a house we qualified for nada, no med help no nothing and we were told that if I lived on the street, had no job and was a drug addict they would have paid for it all......
AAcckkkk sorry, I know you are not talking about money, it just gets me that thos eof us that need help, whatever kind, are last to gep any kind of help.
If you find any type of programs and need letters or emails I am positive you will get help from here!! You sound like a good guy
Whoa, brah, they must be made of steel. I can only imagine what it must be like, yet you maintain a positive attitude. Here's hoping something comes along for you soon my friend. Stay tough, you're an inspiration.
Robert
Robert
Hi Robo—
This is certainly the place to vent; the water is fine here for that. Along with the others, I want to wish you well, and thank you for sharing your unique perspective on the situation. It must be very frustrating to deal with given the insight you have in the medical community.
I think the outrage is alive and well, but it apparently doesn’t exist among those that are empowered with changing the landscape; and I’m not sure what will change anytime soon. HCV obviously doesn’t have the cohesive support that HIV did during its world debut. As you pointed out, the gay community was instrumentally responsible for the huge advances with their disease management. The lack of a cohesive community such as that is readily apparent with this disease; we should be grateful for the many advances the HIV community is now sharing with us.
Good luck as you forge onward, and thanks again for your help around here,
--Bill
This is certainly the place to vent; the water is fine here for that. Along with the others, I want to wish you well, and thank you for sharing your unique perspective on the situation. It must be very frustrating to deal with given the insight you have in the medical community.
I think the outrage is alive and well, but it apparently doesn’t exist among those that are empowered with changing the landscape; and I’m not sure what will change anytime soon. HCV obviously doesn’t have the cohesive support that HIV did during its world debut. As you pointed out, the gay community was instrumentally responsible for the huge advances with their disease management. The lack of a cohesive community such as that is readily apparent with this disease; we should be grateful for the many advances the HIV community is now sharing with us.
Good luck as you forge onward, and thanks again for your help around here,
--Bill
Wow... If you cannot get into a trial, I really hope and pray that the new cocktail drugs (without ifn) will be out for the public sooner than anticipated.
Wishing you all the best, from the bottom of my heart!
Wishing you all the best, from the bottom of my heart!
I do not understand why they do not offer trials to someone like that really needs its. They only take the people that are in good shape to start with.
I would do anything needed to help get you in a study if you or someone else could create a plan. Could we protest, write letters?????
The truth is it is reality and reality ***** at times. I feel for you but offer no pity. My pity goes out to your family. You sound like a wonderful person and father.
I would do anything needed to help get you in a study if you or someone else could create a plan. Could we protest, write letters?????
The truth is it is reality and reality ***** at times. I feel for you but offer no pity. My pity goes out to your family. You sound like a wonderful person and father.
Thanks for the support & love. I'm sorry about your friend.
Not looking for a pity party though. i have much to be happy about in life....3 outstanding beautiful children, a rewarding career, money, friends, etc
These diseases do not define me, my ability to succeed in spite of them does. However, it is increasingly difficult as this HCV thing is a real pain in the a**.
Peace,
Robo
Not looking for a pity party though. i have much to be happy about in life....3 outstanding beautiful children, a rewarding career, money, friends, etc
These diseases do not define me, my ability to succeed in spite of them does. However, it is increasingly difficult as this HCV thing is a real pain in the a**.
Peace,
Robo
If anybody deserves a break it sure sounds like you do.
Robo
Hemophilia has been in the hearts of minds of many of us in here more than you will ever fully understand as we lost a very, very beloved brother to HCV because of it.
You have more support than you can imagine and have probably made 20 people in here just burst out crying spontaneously at their jobs all over the country.
If there is anything we can do to support you please know that we will.
That was hardly venting at all - you just broke my heart and to say I will keep you in my thoughts and prayers is an understatement.
Debby
Hemophilia has been in the hearts of minds of many of us in here more than you will ever fully understand as we lost a very, very beloved brother to HCV because of it.
You have more support than you can imagine and have probably made 20 people in here just burst out crying spontaneously at their jobs all over the country.
If there is anything we can do to support you please know that we will.
That was hardly venting at all - you just broke my heart and to say I will keep you in my thoughts and prayers is an understatement.
Debby
Didn't mean for it to be something to hype or have entertainment value. Trust me there is nothing entertaining about any of this. Just gauging the crowd sensitivity.
Ok so here goes....age 42!
I recently became aware that I am a member of an extremely unlucky exclusive club known as Triple H (Hemophilia, HIV, HCV). I've known about these things for a long time, but wasn't aware that there was a term for us.
Surviving to adulthood with a severe bleeding disorder as a boy is challenging, especially if you love athletics and rough stuff. Since i was born into a physician family i was an early candidate for hemophilia home care (yay me). My coagulopathy was so well controlled that i was like the home care posterchild, no major bleeds but joint bleeds that have become arthritic but tolerable. Strong student like other docs in the family, went to med school to "cure my disease", but Radiology was my calling. To date, my bleeding is well-controlled and factor is self-administered and not from human donor blood (barn door closed after the horse ran out). Hemophilia is a minor nuisance now for me.
As a young man, first learning about sex and relationships then HIV/AIDS becomes epidemic with crosshairs on my blood brothers in the hemophiliac community. If not for HIV activism especially in the gay community, I'd probably be gone. All those squeaky wheels got needed drugs pushed through and now HIV undetectable for 11 years. Long enough to find a wife willing to invest her life with mine and undergo IVF. Have the 3 most amazing kids ever! Wife and kids all HIV/HCV negative. Learned about HCV+ at the IVF time.
So now Hemophilia and HIV are mild inconveniences but HCV is tougher opponent. The patient advocacy for HCV in the Hemophilia population his weak, leaving my blood brothers and I to wither on the vine.
I live a productive life, almost never take a sick day, and am a good father.
i took 2 weeks off 4 years ago when Infn/Riba made it impossible for me to work from coughing, depression, pain etc. Won't do it again unless I can add a targeted anti-hcv drug (rather die). However trial exclusions are so stringent I wonder who they are helping and if there are any more patients to cherry pick that don't have concomitant medical problems.
Where is the outrage?
Where is the National Hemophilia Foundation?
Why aren't they challenging some of these exclusionary criteria?
There is a new documentary being produced that details how I and my community have been victimized. Here's the link to the youtube trailer.
http://www.youtube.com/watch?v=_CGpghqSRrE
I always thought it was my bad luck, but there is culpability aplenty.
My liver has progressed to compensated cirrhosis and I feel very well but unless I catch a break or someone forces the issue trial-wise I'll continue to sit on the sidelines waiting. I am an extreme survivor, but how far can one push their luck? I am not dour or depressed, but fed up and feeling betrayed.
Hemophilia HIV lost its face when Ryan White passed. Who will be the face of Hemophilia HCV? my widow? my fatherless children? my parents when they outlive their youngest child?
So now you know. hardly worth the wait. If anybody i=s part of a Pharmaceutical company or NHF, you know how I feel. i kept it clean
Robo
Ok so here goes....age 42!
I recently became aware that I am a member of an extremely unlucky exclusive club known as Triple H (Hemophilia, HIV, HCV). I've known about these things for a long time, but wasn't aware that there was a term for us.
Surviving to adulthood with a severe bleeding disorder as a boy is challenging, especially if you love athletics and rough stuff. Since i was born into a physician family i was an early candidate for hemophilia home care (yay me). My coagulopathy was so well controlled that i was like the home care posterchild, no major bleeds but joint bleeds that have become arthritic but tolerable. Strong student like other docs in the family, went to med school to "cure my disease", but Radiology was my calling. To date, my bleeding is well-controlled and factor is self-administered and not from human donor blood (barn door closed after the horse ran out). Hemophilia is a minor nuisance now for me.
As a young man, first learning about sex and relationships then HIV/AIDS becomes epidemic with crosshairs on my blood brothers in the hemophiliac community. If not for HIV activism especially in the gay community, I'd probably be gone. All those squeaky wheels got needed drugs pushed through and now HIV undetectable for 11 years. Long enough to find a wife willing to invest her life with mine and undergo IVF. Have the 3 most amazing kids ever! Wife and kids all HIV/HCV negative. Learned about HCV+ at the IVF time.
So now Hemophilia and HIV are mild inconveniences but HCV is tougher opponent. The patient advocacy for HCV in the Hemophilia population his weak, leaving my blood brothers and I to wither on the vine.
I live a productive life, almost never take a sick day, and am a good father.
i took 2 weeks off 4 years ago when Infn/Riba made it impossible for me to work from coughing, depression, pain etc. Won't do it again unless I can add a targeted anti-hcv drug (rather die). However trial exclusions are so stringent I wonder who they are helping and if there are any more patients to cherry pick that don't have concomitant medical problems.
Where is the outrage?
Where is the National Hemophilia Foundation?
Why aren't they challenging some of these exclusionary criteria?
There is a new documentary being produced that details how I and my community have been victimized. Here's the link to the youtube trailer.
http://www.youtube.com/watch?v=_CGpghqSRrE
I always thought it was my bad luck, but there is culpability aplenty.
My liver has progressed to compensated cirrhosis and I feel very well but unless I catch a break or someone forces the issue trial-wise I'll continue to sit on the sidelines waiting. I am an extreme survivor, but how far can one push their luck? I am not dour or depressed, but fed up and feeling betrayed.
Hemophilia HIV lost its face when Ryan White passed. Who will be the face of Hemophilia HCV? my widow? my fatherless children? my parents when they outlive their youngest child?
So now you know. hardly worth the wait. If anybody i=s part of a Pharmaceutical company or NHF, you know how I feel. i kept it clean
Robo
You are reading content posted in the Hepatitis C Community
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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.
Most hemophiliacs have/had HIV and HCV.
My son was lucky and only got HCV through blood tainted
products. My brother died at age 30 not because of Aids
because of HCV. My son was 26 and didn't have HIV
I never thought this would happen. Not ever. What happened
to all the promises doctors gave me?
Forget the NHF, they were no help to me at all.
Neither was the CHF or local chapter.
The outrage in me is almost the same as you
Given the fact that they knew about blood tainted products
and still gave it to our men, fathers , brothers , sons and said
treat anyway for bleeds. Baxter, Highlands are just some of
the companies that were part of this. Not only that after
we had "safe" blood products, the rest was shipped to other
countries,? so they could become infected? where is the justice?
where is the human decency?
Every time I would go forward to congressman, governor etc.
doors are closed. This was murder for many , plain and simple
not to mention the men and boys who are still fighting this disease all
of these diseases, most are effected to the extreme by HCV.
I don't know if I'm making sense, I'm not making sense to much
these days, but I know how you feel to an extent.
With the aids epidemic, thousands were writing congressman
Myself included for my brother. They were finally compensated
however, most had already parish ed. This did not happen
with HCV, not at all, nothing. As many here will attest to
that didn't get HCV through blood products, It doesn't matter
how you got HCV, it matters how you can cure it or manage it
and that is a difficult journey. No one deserves this disease called
HCV.
No trials were given to hemophiliacs.....none, especially with
HIV. I don't think there are trials that will take you today, however
with that being said the newer PI's are due out the end of this
year or beginning of next year or so I've heard.
I came here , I found this forum and with that had more support
and love than you could ever imagine, still, to this day.
You came here to help others, now let others help and guide you,
Much Love
Elaine