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:
Funding vital medical research;
Strengthening health care coverage;
Determining Medicare, Medicaid and SSI eligibility requirements; and
Setting special education funding and policies.
The OIF and the OI community have a serious responsibility 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 with this important process, we have provided easy access to the OI Foundation’s federal government relations activities and positions.
OIF joins other advocacy organizations in writing a letter to the National Institutes of Health and the Office of Management & Budget asking that funds from the recently closed National Children’s Study be directed to for pediatric research. January 21, 2015
Special Needs Trust
Fairness Act (H.R. 670) Sponsor: Rep. Glenn Thompson (R-PA) Status: Waiting for Committee Action
This legislation would enable a disabled individual’s assets
to be held in a trust and used to supplement daily living expenses and care
when government benefits alone are insufficient. Currently, the law only allows family and
legal guardians to establish a special needs trust, even if they are using the
21st Century Cures Act (H.R. 6) Sponsor: Rep. Fred Upton (R-MI) Status: Passed Committee on May 21, 2015; awaiting vote by full House
Increase funding for both the National Institutes of Health by $10 billion over 5 years and the FDA by $550 million over 5 years;
Strengthen the accelerated approval process to ensure industry and FDA are engaged early in the process so that studies are designed to generate the evidence that is needed for accelerated approval;
Expand patient focused drug development by requiring the development of a structured benefit-risk framework for evaluating drugs and the creation of a mechanism to collect and integrate patient experiences into benefit risk decisions;
Establish a process for FDA consideration of surrogate endpoints;
Clarify that FDA may approve drugs that have received breakthrough therapy designation when early stage data provides sufficient evidence of efficacy and safety taking into account the risk/benefit of the drug and the risk of the disease;
Streamline clinical trials and facilitate the use of adaptive clinical trial designs;
Enhance transparency of expanded access programs and make recommendations for how to improve expanded access; and
Provide an additional six months of exclusivity if an approved drug is repurposed to treat a rare disease.
Patients' Access to Treatments Act of 2015 (H.R. 1600) Sponsor: Rep. David B. McKinley (R-WV) Status: Waiting for Committee Action
Prohibits health insurance plans from imposing cost-sharing requirements, including co-payment and co-insurance, applicable to prescription drugs in a specialty drug tier.