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The policies that Congress debates and the laws it passes affect nearly all aspects of the everyday lives of families touched by OI. Some of Congress’s responsibilities include: providing funding for vital medical research; setting policies related to healthcare coverage, and Medicaid eligibility requirements; and making determinations related to special education funding and policies.
As a largely grassroots organization with personalized knowledge of OI, OIF has the ability to educate and influence legislators and government officials who create the laws and regulations that guide policy and programs relevant to OI. In order to help you with this process, we have provided for you easy access to the OI Foundation Federal Advocacy Agenda.
JOIN US!
The OIF Government Advocacy Team consists of dozens of people nationwide affected by OI who want to become actively engaged in the OIF advocacy efforts. Through the integration of a diverse group of voices, the OI Advocacy Team has the opportunity to truly impact the people in Washington and across the globe that guide OI policy and research funding. As a member of the Team, you will receive e-mail alerts of important actions and be called to action in support of the Foundation’s advocacy agenda.
To become an Advocate and join the OI Government Advocacy Team, please send the following information to jstup@oif.org:
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Address:
Email address:
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Connection to OI:
The OIF Federal Agenda
Below, please find the OIF 2009 Federal Agenda which outlines legislation and federal programs significant to OI and describes suggested courses of action for funding these programs. It also sets out new initiatives consistent with the OIF’s mission for which OIF will likely seek federal funding.
The Agenda consists of five components:
OIF Initiatives
The OIF supports and co-funds a number of initiatives that are integral to the advancement of OI research. These programs are funded almost exclusively by private donations through OIF in collaboration with other organizations and research institutions dedicated to OI. In the coming years, OIF will work decision makers in Congress and the Executive Branch to secure federal funding for these programs. OIF will also work with Congress and the NIH to promote the use and expansion of OI related resource centers and registries such as the Linked Clinical Research Centers and the OI registry.
Linked Clinical Research Centers
The LCRC is a group of more than twenty Centers governed by a Coordinating Committee and linked together through a central database. This database contains information on thousands of people with OI, and has comprehensive records containing genetic, radiological, and clinical data. This information is used for clinical studies and facilitates efforts to speed up researching a cure. The LCRC also offers care to adults and children with OI, as well as provides training and information to physicians and researchers. The LCRC is co-funded by the national OIF and the Chicago-based Children’s Brittle Bone Foundation (CBBF) through private donations to these foundations.
OIF is seeking federal funding to help support the LCRCs. Specifically, the funding is needed for the following purposes: Information seminars at new sites; taking of mutation samples, salaries for an administrator and a coordinator; date collection and analysis; clinical meetings, funding for existing and next sites. OIF will work with Congress and the NIH to promote the use of LCRC’s by parents, patients and care givers. Additionally, OIF encourages NIAMS to include a description of OIs LCRCs on its osteogenesis imperfecta health information webpage.
OI Registry
The OI Registry is a definitive, confidential database of people with OI which collects information about symptoms of both adults and children who have OI. This is achieved through a web-based questionnaire that is filled out by adults with OI or parents of children with OI to catalogue symptoms in order to have access to information representative of as many people as possible. Information in the Registry will be studied to see what it shows about symptoms at every stage of life and in every type of OI with the intention of encouraging more research to better understand the history and treatment of OI. OIF will seek federal funding to help expand the OI Registry. Additionally, OIF will work with the Agency for Toxic Substances and Disease Registry at the Centers for Disease Control (CDC) and other relevant agencies to promote the growth and usage of the OI registry for patients and health care providers.
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Legislative Priorities
OI and related bone diseases have a rich legislative history, particularly in recent years as the effects of Osteoporosis and related bone diseases have become a recognized public health concern.
In the current 111th Congress, OIF urges the enactment of the following legislative initiatives:
H.R. 1021/ Access to America's Orthopedic Services Act of 2009
Sponsored By Rep. Raymond Green (D-TX)
This proposed bill sets forth reporting requirements related to federal programs and activities relating to musculoskeletal trauma care. H.R. 1021 calls for the Secretary of Health and Human Services to conduct studies and research followed by a reporting of recommendations on:
· The creation of a standard unit for the measurement of bone mass under the Medicare program
· A potential increase in funding for orthopedic graduate medical students and practitioners
· Granting wider access to orthopedic services for children with musculoskeletal diseases conditions, and injuries in the United States under Medicaid and SCHIP
· Quality and capacity of trauma care for those with orthopedic conditions
· The creation of a bone and joint replacements registry
· The most cost-effective method for measuring bone mass in beneficiaries of the Medicare program and a recommendation for the adoption of such method by the Medicare program.
H.R. 1894 and S. 769/Medicare Fracture Prevention and Osteoporosis Testing Act of 2009
Sponsored By: Rep. Shelley Berkley (D-NV) and Sen. Blanche Lincoln (D-AR)
These two identical pieces of legislation being considered in both the House of Representatives and the Senate and proposes improved access to, and increased utilization of, bone mass measurement benefits under the Medicare part B program.
· Amend title XVIII of the Social Security Act to establish a national minimum payment amount for DXA and VFA scans, or any successor to these scans.
· Direct the Secretary to study and report to the Congress on: (1) the ramifications of Medicare reimbursement reductions for DXA and VFA on beneficiary access to bone mass measurement benefits; and (2) the methods to increase use of bone mass measurement by Medicare beneficiaries.
· Requires the Secretary to conduct studies related to methods of measuring bone mass in Medicare beneficiaries.
Access to Care
Access to affordable, reliable and quality health insurance is critical for people with OI and their families. As Congress debates the overhaul of the nation’s health care system, the OIF urges policymakers to ensure affordable access for people with chronic health conditions such as OI and further requests that Congress repeal the current 24 month waiting period for Social Security Disability Income.
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Increase Funding for the NIH
The National Institute of Health (NIH) is the agency within the Department of Health and Human Services (HHS) responsible for biomedical and health related research. The NIH consists of 27 separate agencies, each holding jurisdiction for a series of related diseases and/or conditions. From 2005 to 2008 the NIH spent a total of approximately $27 million on research into the causes, symptoms and potential treatments and/or cures for osteogenesis imperfecta. In 2009 and 2010, the NIH has dedicated an additional $5 million per year, or $10 million total to continue these research projects.
OIF urges Congress to support continued increases in funding for the NIH. Additionally OIF encourages NIH to increase funding dedicated to OI to $9 million per year. OI specific funding has decreased significantly in recent years.
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
OI research most often falls under the purview of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), which was authorized by the Health Research Extension Act of 1985, and was officially created April 8, 1986. Since then, NIAMS has become an integral institution that leads the majority of federal study and research on OI and is responsible for the bulk of advancements in this field. In FY2008, NIAMS was given an approximate budget of $511.3 million out of a total NIH FY08 operating budget of $29.3 billion, which is about 1.76%.
Since FY2000, the NIAMS budget has steadily decreased as a percentage of the overall NIH budget, from 1.96 percent in FY2000 to a projected 1.72 percent in FY2009. OIF urges the NIH to readjust funds allocated to NIAMS to the FY2005 level, which was 1.79 percent of total NIH budget. In FY2009, this would be a budget increase from a projected $524.9 million to a projected $546.6 million.
The NIH’s Osteoporosis and Related Bone Diseases National Resource Center
The NIH’s Osteoporosis and Related Bone Disease National Resource Center is an information clearinghouse designed to capture and disseminate information about osteoporosis, OI and other related bone diseases. This resource center was created under the NIH Revitalization Act of 1993, and is maintained by NIAMS. This institution provides timely information for health professionals, patients, and the public on osteoporosis, Paget’s disease of bone, OI, and other metabolic bone diseases.
OIF encourages NIH to continue funding the national resource center and will work with the agency to ensure that the OI-related information is current.
Other OI-Relevant NIH Institutes
In addition to NIAMS, there are a number of NIH institutes that dedicate resources to researching the sources, treatments and cures to ailments relevant to OI. An increase in funding for these relevant institutes may result in the advancement of cures and treatments for isolates symptoms of OI. These institutes are:
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The National Human Genome Research Institute (NHGRI): NHGRI, which is devoted to advancing health through genome research, was the leading NIH contributor to the Human Genome Project, which successfully mapped the human genome in 2003. NHGRI’s work now encompasses a broad range of research aimed at expanding understanding of human biology and improving human health. As a genetic disease, OI research benefits with contributions to the field of genetic research.
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National Institute on Deafness and other Communication Disorders (NIDCD): NIDCD is the institute at NIH that conducts and supports biomedical research and research training on normal mechanisms and diseases and disorders of hearing, balance, smell, taste, voice, speech and language. Early loss of hearing is a potential symptom in most types of OI. As such, research into temporary cures and long-term solutions for hearing loss has a direct benefit for those suffering from OI.
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The National Institute of Dental and Craniofacial Research (NIDCR): NIDCR is the NIH institute that promotes and conducts research designed to understand, treat and ultimately prevent infectious and inherited craniofacial-oral-dental diseases. Individuals with Type IB and Type IVB OI often experience a weakening and discoloration of the teeth as a symptom of their disease. NIDCR explores methods of treatment and prevention for symptoms such as this.
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Other Bone Health Initiatives
HealthyPeople, HealthierUS and VerbTM
Three programs by the federal government that serve all age groups to encourage general wellbeing, an important part of treatment and management of OI, as well as early medical screening for bone and joint disorders.
OIF requests that the Department of Health and Human Services (HHS) include a member of the OI community on the advisory board of this program.
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Health Care Reform
Current health care reform proposals being considered in the House and Senate will have an impact on the type and quality of treatment that people with OI receive, their access to care, and the availability of assistance with payment. OIF is proactively monitoring the development of health care reform and encourages Congress to pass a bill that:
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Improves access to care for all Americans by expanding health insurance coverage through requiring guaranteed issue insurance regardless of pre-existing conditions; -
Emphasizes chronic care management programs; -
Ensures high quality of care through expanded use of quality measures linked to payment incentives; -
Eliminates any waiting period for access to Medicare benefits; -
Encourages better coordination and integration of care across different specialties and care settings; -
Protects current access to durable medical goods including assistive equipment like wheelchairs and hearing aids.
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The OI Foundation would like to thank the volunteers at Washington Strategic Consulting for their hardwork and dedication to the OI Community.
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