Special news announcement to the sickle cell community
from Allan Platt PA-C, Program Coordinator, The Georgia Comprehensive Sickle Cell Center at Grady Health System
US Senate Bill 874 and House or Representatives Bill 1736 - Sickle Cell Treatment Act of 2003
Introduced in the US Senate and House April 10, 2003
Missouri Republican Senator Jim Talent is proposing legislation aimed at helping Sickle Cell Patients across the US. Mr. TALENT (for himself, Mr. SCHUMER, and Mr. GRAHAM of South Carolina) introduced the bill; which was read twice and referred to the Committee on Finance April 10, 2003. On the House side the bill was introduced by Mr. DAVIS of Illinois for himself, Mr. BURR, Mr. SHIMKUS, and Mr. RUSH which was referred to the Committee on Energy and Commerce. This is the first major national legislation to aid those with sickle cell disease in many years. Senator Talent called upon the Senate to "find a cure" for sickle cell by enacting this legislation. This bill does the following:1. Provides Federal Matching Funds for Sickle Cell Disease (SCD) Services: Right now, Medicaid covers physician and laboratory services for all states. This bill provides that any state that spends money on SCD services (as provided for in this bill) will receive a federal match. For example, Missouri’s matching rate is 61.23%. This means that for every $100 the State spends on Medicaid, the federal government contributes $61.23 and the State puts in $38.77.
This would allow states to foster SCD programs and providers in a matter suitable to the particular aspects of SCD, which differs from other illnesses. So, if a state wanted to increase reimbursement rates for SCD blood transfusions, for example, it could do so through rate setting for the new SCD benefit without having to increase reimbursement for all Medicaid blood transfusions; therefore, making it easier for a state to reimburse at a higher rate for SCD-related treatment.
2. Provides Federal Reimbursement for Education and Other Services Related to the Prevention and Treatment of SCD: This bill allows States to get a federal 50-50 match for non-medical, administrative expenses to include outreach and genetic counseling about Sickle Cell Disease (SCD) and its treatment for SCD patients of any age.
Under the bill, States could pay for outreach or counseling, or other non-medical services in a variety of ways. Some of those ways could resemble how States pay for medical services, e.g., claim-by-claim for services as they are provided. States might also designate certain entities for the program and give them a kind of up front lump sum payment. The possibilities are numerous and without a whole lot of federal constraints except, of course, that the activity must relate to Medicaid. Thus, it would not be permissible to use the medicaid money to pay for Public Service Announcements aimed at the general population.
3. Creates New Service Bundle: This allows hospitals and clinics to do outreach with non-medical personnel, educating high-risk communities about recognizing SCD, as well as to allow non-medical personnel like counselors to spend time with SCD families to discuss how to best manage the disease.
4. Creates Grant Programs for 40 Health Centers Nationally: HHS will make grants to up to 40 eligible health centers across the U.S. of $10,000,000 for each fiscal year 2004- 2009. Grants may be used for purposes including the education, treatment (i.e., genetic counseling and testing), and continuity of care for individuals with SCD, for training health professionals, and to identify and secure additional Federal funds to continue SCD treatment.
5. Creates National Coordinating Center: The National Coordinating Center will collect, monitor and distribute information on best practices on the prevention and treatment of SCD; develop a model protocol for the grant recipients to follow as a quality control mechanism; develop educational materials regarding the prevention and treatment of SCD; and submit a written report to Congress to ensure fiscal accountability and provide information of recent developments towards a cure for SCD.
What the Bill Does for States
The approach taken in this bill is to add services related to SCD to the list of services covered by Medicaid for those who are eligible for Medicaid under current eligibility rules. Medicaid already covers most of the services in the bill (i.e., under the rubric
of "physician services" or "prescribed drugs" or "clinical services", etc.). However, in proposing the new sickle cell specific package of services, the bill allows states to:1.Combine services to creatively target specific needs of persons with SCD.
2.Offer additional services as part of the sickle cell package that might not be otherwise covered by Medicaid or, if covered, would be hard for the State to restrict coverage for narrow groups.
3.Use Medicaid money to work with providers to better serve areas with a high prevalence of SCD in fields such as education and counseling, which are currently not reimbursed by Medicaid.
4.Create opportunities for states and providers to partner to determine "best practices" such as the most effective and efficient use of medical resources toward SCD treatment and education.The bill asks for $50 million over five years to fund 40 sickle cell health centers nationwide.
The Administrator, through the Bureau of Primary Health Care and the Maternal and Child Health Bureau, shall conduct a demonstration program by making grants to up to 40 eligible entities for each fiscal year in which the program is conducted under this section for the purpose of developing and establishing systemic mechanisms to improve the prevention and treatment of Sickle Cell Disease, including through--
(A) the coordination of service delivery for individuals with Sickle Cell Disease;
(B) genetic counseling and testing;
(C) bundling of technical services related to the prevention and treatment of Sickle Cell Disease;
(D) training of health professionals; and
(E) identifying and establishing other efforts related to the expansion and coordination of education, treatment, and continuity of care programs for individuals with Sickle Cell Disease.
Senate Bill 874: go to this web page at the US Senate web site and do a search on the key words: sickle cell
http://www.senate.gov/pagelayout/legislative/g_three_sections_with_teasers/legislative_home.htmNews http://www.krcg.com/news_details.asp?story_number=3947
What can you do? - contact your State Senators and Representatives to support this bill - The Senate Finance Committee has jurisdiction over S. 874, and the House Energy and Commerce Committee has jurisdiction over H.R. 1736. Calling faxing and writing your Members of Congress and other Members on the two committees of jurisdiction. Please send this to others who can help support this
Contacts:
To download the bill, a letter from the supporting senators, a summary handout and a list of the Senate Finance Committee go to http://www.scinfo.org/news.htm
News report http://www.krcg.com/news_details.asp?story_number=3947
The US Senate web site http://www.senate.gov/
The US Senate Finance Committee http://finance.senate.gov/
US House web site http://www.house.gov/
US House Energy Committee Members http://energycommerce.house.gov/108/members/members.htm