Mission Days in DC--and a challenge for US citizens

[Guest guest]

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