Re: Mission Days in DC--and a challenge for US citizens - Dorothy

[Guest guest]

Dorothy,

Thank you for your work on behalf of all of those who have blood

cancers and lymphomas.

Count me in for the letter writing campaign!! And I have friends who

will write their legislators, too.

We cannot remain complacent and think " someone else will do it. "

JoAnn

>

> Hi gang,

>

> I spent Sunday, Monday and Tuesday in Washington DC for the Leukemia &

> Lymphoma Society Mission Days and while I'm still fired up (this event

> really does that) I want to tell you about this and offer a challenge.

>

> This was my third annual trip to DC to do advocacy for the LLS. There

> were about 250-300 of us that spent a day or two preparing and then a

> whole day on Capitol Hill meeting with our senators and

> representatives (or their staff) asking primarily for funding for

> research for blood cancers. Most of the executive directors of the

> LLS chapters from around the US were there in addition to a number of

> volunteers (like myself). There were a number of us CML survivors

> there--I think we are luckier than a lot of people with other blood

> cancers so we feel like we need to give back. I had the pleasure of

> meeting from Rhode Island who was diagnosed in 2006. You can

> check out his blog where he has written about Mission Days

http://jongershon.blogspot.com

>

> Just to give some background--we all want cures and we all want

> research to move along. The basic research for CML that we are all

> familiar with because we wait each year for results from ASH etc. is

> funded by two main sources--our US government and the LLS. The LLS

> has a lot of amazing people and volunteers working very hard to raise

> money but they can only afford to fund 15-20% of the very top notch

> research at the very top centers. (There's a lot of other good

> research that doesn't even make it into consideration at the LLS.)

> The largest part of the remaining 80-85% must come primarily from our

> tax dollars--either that or we just wait another 100 years or more for

> progress. Drug companies do spend on research as well but not as much

> as they would have you believe and they don't really spend on basic

> research. From 1998 thru 2003 we did have a large increase in

> funding for the NIH and NCI (the two government institutions

> responsible for funding research)--in fact funding doubled during that

> time. I don't think it's an accident that at the end of that time

> period we saw for the first time in history an actual annual decrease

> in cancer deaths. That decrease lasted 2 years. For the past 5 years

> we have seen cuts each year in funding (and the cancer death rate

> stopped declining last year). Labs have shut down and research has

> been impacted. For those of you who listened to the latest CML

> teleconference from Dr. Druker--you might have noticed that he said if

> there was a take home message it was that we needed more funding.

> This is something the entire science community is very concerned about.

>

> This year the LLS is asking for a 6.5% increase in funding for the NIH

> and a 9.5% increase in funding for the NCI. All the different cancer

> organizations got together and decided how much to ask for so that we

> would all bring the same message. Each week a different group has

> visits like we had this week in congress and we are all asking for the

> same increase. These increases are just enough to keep even with

> inflation--without this amount there will need to be cuts in research.

>

> I live in a state and area that are very conservative and the past two

> years we've had very little sympathy for our request for increased

> funding. We've been a " can't do " country. We've been told over and

> over that we can't afford to do this funding anymore. My own

> congressman says that this needs to be picked up by the private sector

> (we all know that won't happen but it sounds good). We were in for a

> big surprise this year as we went to our senators' offices. Both of

> our senators had signed on to a letter going around the senate which

> was asking for a 8.5% increase for the NIH (remember we were asking

> for 6.5%)--we were told the day before that there wasn't any letter or

> support yet. The letter didn't support any increase for the NCI but

> they said some of the funds from the NIH budget would go to the NCI.

> The NIH budget is quite a bit larger than the NCI budget so there

> might be enough with this increase to fund the NCI to the extent that

> is needed. We were all very pleasantly surprised and I talked with

> people from other states and they were all getting the same response.

> I don't know if the change is because it's an election year or if

> they've decided this would jump start the economy but I'll take it if

> it indeed comes thru. But--this doesn't mean it will actually

> happen. We still need to hold their feet to the fire so to speak. It

> just means our chances are much better than we expected. It was nice

> to leave Washington actually feeling like we might get some of our

> " asks " instead of getting nothing at all like we have been getting the

> past couple years.

>

> We had two other requests. One is kind of an odd request and I doubt

> if we will get it. Up until last year there was a program at the

> Department of Defense that funded research for CML. This program

> started when a brother of some congressman died of CML and he was able

> to get this special funding thru the DOD (this is an earmark). So

> last year when they dropped the earmarks we lost our research

> program. Now the LLS is trying to get it back but it would be for all

> blood cancers and not just CML. They are using as justification the

> fact that exposure to toxins in war zones can lead to leukemias.

>

> The final request isn't for money--it's for a law mandating that

> insurance companies be required to pay for all normal care expenses

> for people in clinical trials. So if you went into a trial for say

> SKI-606 they would be forced to pay for your BMB, bloodwork, doctor's

> visits etc. Currently 22 states have laws that require this but

> people in the other 28 states often get turned down by insurers when

> they try to participate in a trial. This slows progress as it's hard

> to recruit enough patients for trials. I had this happen when I got

> a trial slot for Gleevec in 2000. I had a big fight with my insurance

> company as they were refusing to pay anything toward my visit to MDACC

> if I did this. It made no sense as I was on interferon and that was a

> very expensive drug. My drug costs would go to zero in the trial and

> I would have to get biopsies and bloodwork no matter which way I went

> so they would actually save a bunch if I was in the trial (in the

> short run--they could spend more if I lived a lot longer). I had to

> threaten to get a transplant in order for them to finally relent. We

> heard a very sad story from a young (around 20) daughter who lost her

> mom in December to Multiple Myeloma. She spent her last year fighting

> unsuccessfully for access to a clinical trial. It was her only hope

> but the costs of picking up all her own costs would have bankrupted

> the family. The whole room was in tears when we heard this story (as

> was the poor girl telling it). This seems like a no-brainer and I

> told Congresswoman Sue Myrick's staff assistant that. She said there

> is always another side to the story. I said if she found out what it

> was she should let me know. As far as I could tell the only other

> side of the story I could see is that patients might live longer and

> cost the insurance company more. I don't know if we'll get this one

> or not. We had some sympathy but only 1 commitment. As a side note

> on this issue--some of the state laws that have this mandate were

> brought about by the work of LLS advocacy volunteers--I know that

> Wisconsin's law is the result of a very strong LLS advocacy volunteer.

>

> Now here's my challenge--I would like all of you that live in the US

> to write your senators and your representative and ask them to support

> these initiatives. I will write the letter for you (and leave space

> for you to tell your own story) and send it to anyone interested if I

> get 50 people to show interest in doing this. All you would need to

> do is make a few changes to your own story and print it off and mail

> it to your 2 senators and 1 representative. They are much more

> interested in letters like this than you might imagine and they really

> do make a difference. It's likely that your senators had a visit this

> week and know what this is about and your letter would help emphasize

> the importance of this. Your congressional representative got a visit

> this week only if there was someone there from his/her district.

> Believe me this is a chance to really make a difference.

>

> If you aren't interested in taking this challenge that's fine--but I

> don't want to hear any complaining about why " they " don't come up with

> cures in that case;>)

> Let me know if I should write a letter.

>

> Best wishes,

> Dorothy

> dx 5/2000

> pcru

>

> " Never doubt that a small group of thoughtful, committed citizens

> can't change the world. Indeed, it's the only thing that ever has. "

> Margaret Mead

>

>

>