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 Jonathan 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 --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
