CFHockeyMom
New member
I'm sure you're all aware of the proposed budget cuts to CSHC, including funding to the adult CF program. <img src="i/expressions/face-icon-small-sad.gif" border="0">
Attached is an e-mail I recieved with some positive news but there is still plenty of work to do. So, if you live in Michigan please keep sending letters to your legislators.
I know the Governor has to make big cuts to balance the budget and I support that effort but I know there are other areas that could/should be cut first.
Here's a copy of the e-mail...
"Hi all:
We are making some good headway! But more work is still needed.
1) News has it that the Senate Appropriations Subcommittee on Community Health voted this week to RESTORE FUNDING for the adult CF program.
2) Progress looks good in the House, but nothing firm yet. The House Community Health appropriations subcommittee meeting scheduled for this week was cancelled.
3) The governor remains opposed.
4) A small group of key legislators, state administrators, and the governor will be making the final budget decisions. A SAMPLE LETTER is attached for you to personalize and send to the list of 7 people. Note that the list of people is in the same file as the letter.
5) We are pleased to have the assistance of Rick Colby, of Colby and Company, to help fight for funds for the adult CF program. Rick has been very helpful already in Ohio, by securing funding for the adult CF program, fighting severe budget cuts for the children's program, and getting legislation passed and signed by Governor Taft declaring May as Ohio's CF Awareness Month and also establishing a legislative task force to advise the state on the medical needs of people with CF. Rick is on contract to Chiron for his work with both states. In addition, the Boomer Esiason Foundation is weighing in in Michigan a bit as well. Rick can be reached at rcolby@colbyandcompany.com.
6) Good press coverage on Wednesday in The Detroit News - see attached story, or go to link. Big thanks to Ivan Harner of the Hemophilia Foundation of Michigan and Dan Rouan for helping to secure this article.
<a target=new class=ftalternatingbarlinklarge href="http://www.detnews.com/2005/health/0506/01/B01-199963.htm ">Detroit News Link</a> "
Now the sample letter to send...
MICHIGAN - SAMPLE LETTER TO BUDGET GROUP TO OPPOSE ADULT CF PROGRAM CUTS
Please fill in blanks to share your personal story.
[ADDRESS]
[DATE]
Dear Governor/Senator/Representative___:
Via Fax
As a [PERSON WITH CYSTIC FIBROSIS (CF)/PARENT OF A CHILD WITH CYSTIC FIBROSIS (CF)], I urge you to provide funds for medical assistance for adults with CF through Childrens Special Health Care Services in the Department of Community Health. Also, I urge you to strike language that eliminates coverage for these adults under House Bill 4379 and Senate Bill 267, in Sec. 1202 (b) stating and who are not otherwise covered by health insurance, as well as similar language for those with hemophilia.
Although the budget cuts now target only those who have other insurance to, in theory, cut the costs for CF care to Michigan, this plan actually will increase the states costs. Adults with CF who have other insurance still need the states assistance, since they cannot afford out-of-pocket costs without such assistance. The average cost of care for CF medications alone can reach $50,000/year. Instead of helping these adults with the 20 percent copay, the state will likely have to pay 100 percent of their bills when these individuals become too sick to work and end up on Medicaid without other insurance. This is not the way to save the state $4.6 million.
The news of this budget cut has ignited panic among the CF community. Many concerned individuals in Michigan have testified before the legislature to share their fears that the government is now abandoning them just when there are treatments to help them stay alive.
[INSERT INFORMATION ABOUT YOU OR YOUR FAMILYS OR FRIENDS EXPERIENCES WITH THIS PROGRAM.]
We urge you to provide funding for life-saving care for all individuals currently eligible for this program. Without this continued medical assistance, the government will end up paying more down the road when these individuals can no longer retain some private insurance and must rely fully on government programs for their care.
Sincerely,
[YOUR NAME]
[YOUR ADDRESS]
Now the addresses and names of who you should send this to...
Governor Jennifer Granholm 517 373-3400
P.O. Box 30013 517 335-6863 FAX
Lansing, MI 48909
Mary A. Lannoye 517 373-7560
State Budget Director 517 241-5428 FAX
Office of the State Budget
111 S. Capitol, Romney Bldg., 6th Flr.
Lansing, MI 48913
Senator Ken Sikkema
Senate Majority Leader 517 373-0797
P.O. Box 30036 517 373-5236 FAX
Lansing, MI 48909-7536
Representative Craig M. DeRoche 517 373-0827
Speaker of the House of Representatives 517 373-5873 FAX
166 Capitol Building
P.O. Box 30014
Lansing, MI 48909-7514
Senator Shirley Johnson 517 373-2523
Chair of the Senate Appropriations Committee 517 373-5669 FAX
PO Box 30036
Lansing, MI 48909-7536
Representative Scott Hummel 517 373-1778
Chair of the House Appropriations Committee 517 373-5780 FAX
351 Capitol Building
P.O. Box 30014
Lansing, MI 48909-7514
Representative Dianne Byrum 517 373-0587
House of Representatives Minority Leader 571 373-9430 FAX
167 Capitol Building
P.O. Box 30014
Lansing, MI 48909-7514
Sorry this is so long but I wanted to make sure all the info was out there. Please keep spreading the word.
Attached is an e-mail I recieved with some positive news but there is still plenty of work to do. So, if you live in Michigan please keep sending letters to your legislators.
I know the Governor has to make big cuts to balance the budget and I support that effort but I know there are other areas that could/should be cut first.
Here's a copy of the e-mail...
"Hi all:
We are making some good headway! But more work is still needed.
1) News has it that the Senate Appropriations Subcommittee on Community Health voted this week to RESTORE FUNDING for the adult CF program.
2) Progress looks good in the House, but nothing firm yet. The House Community Health appropriations subcommittee meeting scheduled for this week was cancelled.
3) The governor remains opposed.
4) A small group of key legislators, state administrators, and the governor will be making the final budget decisions. A SAMPLE LETTER is attached for you to personalize and send to the list of 7 people. Note that the list of people is in the same file as the letter.
5) We are pleased to have the assistance of Rick Colby, of Colby and Company, to help fight for funds for the adult CF program. Rick has been very helpful already in Ohio, by securing funding for the adult CF program, fighting severe budget cuts for the children's program, and getting legislation passed and signed by Governor Taft declaring May as Ohio's CF Awareness Month and also establishing a legislative task force to advise the state on the medical needs of people with CF. Rick is on contract to Chiron for his work with both states. In addition, the Boomer Esiason Foundation is weighing in in Michigan a bit as well. Rick can be reached at rcolby@colbyandcompany.com.
6) Good press coverage on Wednesday in The Detroit News - see attached story, or go to link. Big thanks to Ivan Harner of the Hemophilia Foundation of Michigan and Dan Rouan for helping to secure this article.
<a target=new class=ftalternatingbarlinklarge href="http://www.detnews.com/2005/health/0506/01/B01-199963.htm ">Detroit News Link</a> "
Now the sample letter to send...
MICHIGAN - SAMPLE LETTER TO BUDGET GROUP TO OPPOSE ADULT CF PROGRAM CUTS
Please fill in blanks to share your personal story.
[ADDRESS]
[DATE]
Dear Governor/Senator/Representative___:
Via Fax
As a [PERSON WITH CYSTIC FIBROSIS (CF)/PARENT OF A CHILD WITH CYSTIC FIBROSIS (CF)], I urge you to provide funds for medical assistance for adults with CF through Childrens Special Health Care Services in the Department of Community Health. Also, I urge you to strike language that eliminates coverage for these adults under House Bill 4379 and Senate Bill 267, in Sec. 1202 (b) stating and who are not otherwise covered by health insurance, as well as similar language for those with hemophilia.
Although the budget cuts now target only those who have other insurance to, in theory, cut the costs for CF care to Michigan, this plan actually will increase the states costs. Adults with CF who have other insurance still need the states assistance, since they cannot afford out-of-pocket costs without such assistance. The average cost of care for CF medications alone can reach $50,000/year. Instead of helping these adults with the 20 percent copay, the state will likely have to pay 100 percent of their bills when these individuals become too sick to work and end up on Medicaid without other insurance. This is not the way to save the state $4.6 million.
The news of this budget cut has ignited panic among the CF community. Many concerned individuals in Michigan have testified before the legislature to share their fears that the government is now abandoning them just when there are treatments to help them stay alive.
[INSERT INFORMATION ABOUT YOU OR YOUR FAMILYS OR FRIENDS EXPERIENCES WITH THIS PROGRAM.]
We urge you to provide funding for life-saving care for all individuals currently eligible for this program. Without this continued medical assistance, the government will end up paying more down the road when these individuals can no longer retain some private insurance and must rely fully on government programs for their care.
Sincerely,
[YOUR NAME]
[YOUR ADDRESS]
Now the addresses and names of who you should send this to...
Governor Jennifer Granholm 517 373-3400
P.O. Box 30013 517 335-6863 FAX
Lansing, MI 48909
Mary A. Lannoye 517 373-7560
State Budget Director 517 241-5428 FAX
Office of the State Budget
111 S. Capitol, Romney Bldg., 6th Flr.
Lansing, MI 48913
Senator Ken Sikkema
Senate Majority Leader 517 373-0797
P.O. Box 30036 517 373-5236 FAX
Lansing, MI 48909-7536
Representative Craig M. DeRoche 517 373-0827
Speaker of the House of Representatives 517 373-5873 FAX
166 Capitol Building
P.O. Box 30014
Lansing, MI 48909-7514
Senator Shirley Johnson 517 373-2523
Chair of the Senate Appropriations Committee 517 373-5669 FAX
PO Box 30036
Lansing, MI 48909-7536
Representative Scott Hummel 517 373-1778
Chair of the House Appropriations Committee 517 373-5780 FAX
351 Capitol Building
P.O. Box 30014
Lansing, MI 48909-7514
Representative Dianne Byrum 517 373-0587
House of Representatives Minority Leader 571 373-9430 FAX
167 Capitol Building
P.O. Box 30014
Lansing, MI 48909-7514
Sorry this is so long but I wanted to make sure all the info was out there. Please keep spreading the word.