docandjeanie wrote:ph4ever wrote:I would support it but Lance is such a freaking jerk to his family and treated his grandparents so badly I just can't.
Besides cancer has tons of research and public awareness while the real danger facing Americans right now is another disease that is not getting any public awareness. In 2005 it was reported that this disease would get psa's (public service announcements) but that never transpired. Now congress is trying to lump this disease in with another which by doing so will eliminate true public awareness to a disease that is spreading 10 times faster than the HIV/AIDS virus and already infected 5 times more Americans.
PLEASE WRITE YOUR CONGRESSIONAL REPRESENTATIVES AND URGE THEM TO NOT VOTE FOR HR2552!!!!!!!
I understand about Lance and his family issues, but he is the spokeperson that we who are afflicted by cancer need. I am thankful that he is speaking out for me, cancer is a terrible thing, the drugs, the anxiety, the fear, the symptoms. It's no fun at all. $150K in medical bills (thank god I have insurance) and it's 20K for every chemo treatment. Something has to be done about this, hmo's and hospitals it's out of control, by the time I am done from March of this year, it will have cost me and my insurance company over $200K. That was just for the surgery, treatments, and every three months I will need follow up, it will cost even more $$$$$$ We need Lance to help us. I can't imagine what people do without insurance, it's really pathetic.
I think it's great that we spoke and they listened. Your cause maybe a valid one too, and you just need to get a spokeperson to speak out about it, mobilize and this could happen for you. I thank Lance for all he is doing for us. What is the disease that you speak off, I don't think you mentioned what it was. Post it on BN and see what happens you could get a lot of awareness for it. I will check it out.
Thanks for looking and listening.
Jeanie
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Let's see Naomi Judd, Peter Lawford and David Marks are 3 right off the top of my head..... I can provide a list of "celebrities" that have this disease - many who do speak out for public awareness if you would like.
The simple fact is without US Goverment backing and approval for funding/research of ANY disease INCLUDING CANCER it's damn hard to get any type of public awareness campaign going on unless the disease itself becomes part of a "political" campaign
The simple fact is that the US Government does not want public awareness of this disease as it would cost them a huge ton of cash.
Appx 70% of those in the US infected with this disease are US Veterans. The VA only treats about 17% of all veterans who have this disease and is now refusing claims for treatment making the veterans provide proof they received jetgun injections. One strain of this disease only has about a 50% success rate in obtaining a sustained viroligical response requiring those that have the strain to go multiple rounds of treatment. It's not uncommon that many on the 3rd or 4th round to do a double dose of chemo and the pills. I just completed my 2nd round of treatment and I've got the "easy" kind to cure.
The chemo we must go thru (interferon) plus pills alone cost an average of $2000 per month with treatment lasting anywhere between 24 - 72 weeks depending on the "strain" you have. Then there's the cost of the other meds - many need additional meds such as antidepressants, procrit, and the other meds to combat the sides of the treatment. We face the same anxieties as cancer pts as we are trying to not have cancer. Like you we're faced with biopsies and testing throughout treatment plus ever 6 months thereafter. And like many that go thru chemo for cancer we are left with the brain fog, rheumatoid arthritis, scarred lungs leading to COPD and the onset of other cancers.
In 2005 S521 recognized that at that time conservative estimates place the costs of direct medical expenses at more than" $1,000,000,000 in the United States annually, and such costs will undoubtedly increase in the absence of expanded prevention and treatment efforts." S521 was defeated.
This disease is one of the leading factors in the rise of liver cancer and the need for liver transplants with an average of 5,000 to 7,000 a year and a transplant waiting list of average 17,000 a year.
The US Government does not want the public to recognize the fact that this disease is being spread by not only IV and intranasal drug use but also nail parlors, unscrupulous tattoo and piercing parlors and the medical profession as well for fear of public panic. More and more people are finding they are infected BY THEIR SURGEONS. Since May there have been worldwide "news headlines" advising people to be tested because of exposure from anesthesiologists, surgeons, medical laboratories, clinics providing vitamin injections, and in Canada - I believe it was Montreal or Quebec people who recieved vaccinations/tb testing thru the public school systems in the 1960's were urged to be tested (funny but no mention in the US and I distinctly remember being given the tb test by jetgun as a grade schooler in the 60's)
This disease can also be spread by sharing personal care items - nail clippers, razors and toothbrushes.
This disease is asymptomatic and an infected person can go for 20-30 years without symptoms. It's not uncommon during surgery for a surgeon to accidently cut themselves during surgery. If they're infected and don't know it - then their patient runs a high risk of becomming infected. (and the fact it's asymptomatic is another VA reason for refusal of treatment - you don't have symptoms of the disease, you don't need treatment mentality)
You do realize that the high costs of meds FOR ANY DISEASE does fall on the head of the US Government as we are one of only 2 countries worldwide that allow prescription drug commercials on television? Who do you think pays for those commercials - it's us - the patients and consumers of all these medicines.
I agree with you 1000% that "something" needs to be done regarding the health care system in America - In working with various different organizations in the Unites States (I am also affiliated with a few international orginaziations) daily in fighting this disease including veterans groups, we all agree about the need for reform but considering the way our government treats our veterans a nationalized form of heath care is really not an viable option for us.
This disease - it's HCV, Hepatitis C and I have started several threads here in the past regarding this disease urging BN'ers to be tested, to write their congressional representatives to amend or defeat house bills and senate resolutions. I personally know of BN'ers that have had family and friends battle this disease. In fact one BN'er is working directly with me developing a new concept in worldwide HCV Awareness and Support. We've already obtained permission from a recording artist to use his material as our "theme" song and will soon be "announcing" this new format on myspace as well as other forums.
Unfortunately with HCV you're also faced with the stigma as many bigoted narrow minded people consider this as a "junkie" disease and that those of us infected with this disease "got what we deserved for using dirty needles"
I am happy the message is getting out and people are seeing this.
I've had TOO many family members affected by various strains of this disease. I just wish there were as many strong voices being heard for other diseases, such as Crohn's and Juvenile Diabetes, just to be selfish! Our whole healthcare system needs an overhaul, so all people with life threatening and life altering diseases could get quality care! Just MHO! 
