House Passes Research Bill

Leesburg Today reports:

A bill honoring 10-year-old Leesburg resident Gabriella Miller to provide $126 million for pediatric research grants passed in the U.S. House of Representatives today.

“Less talking, more doing. We need action,” the vibrant little girl told a crowd during an event in October, and some of the most powerful men and women in Congress repeated that quote on the House floor Wednesday.

Gabriella was diagnosed with a cancerous brain tumor in November 2012, and in the 11 months that followed she became an outspoken advocate for more awareness and funding for pediatric diseases. She lost her battle with the disease Oct. 26.

The Gabriella Miller Kids First Research Act would require the director of the National Institutes of Health to allocate $126 million—$12.6 million each year for 10 years—of appropriated funds for pediatric research. The money would be re-designated from the Presidential Election Campaign Fund for national party conventions to made into research grants for pediatric autism, cancer and other diseases.

The bill, with more than 150 co-sponsors, passed on a 295-103 vote.

The Hill reports:

Most Democrats — 102 of them — rejected the bill as a weak attempt to restore a small amount of the spending cuts the GOP has already foisted upon the National Institutes of Health (NIH).

"It is a disingenuous and empty attempt by the Republicans to divert attention from the fact that they have voted to cut research time and time again," said Rep. Frank Pallone Jr. (D-N.J.).

The bill would take $126 million in money that is now meant to fund presidential nominating conventions. It would spread that money out over 10 years.

But Democrats who voted against it argued that Republicans are responsible for $1.5 billion in cuts to the NIH, and that the bill does not represent a real attempt to restore funding.

"That's why I think the Republicans are not making a sincere effort to support NIH research," Pallone said. "This is a joke." 

Majority Leader Eric Cantor (R-VA) has been pushing hard for the bill:

Autism Speaks Priorities

Autism Speaks lists several priorities for President Obama's second term:

 

Disability Initiatives in the President's Budget

From a White House fact sheet on the FY13 budget:

Increase Funding for the Education of Children with Disabilities. The Budget provides $11.6 billion for the Individuals with Disabilities Education Act (IDEA) Grants to States to provide a high quality education and help offset State and local education costs for children with disabilities. The Budget also provides a $20 million, or 5 percent, increase for the IDEA Infants and Families Program to provide the youngest children a good start. In addition, the Budget provides $30 million, a $28 million increase over 2012, for PROMISE (Promoting Readiness of Minors in SSI), a four agency joint pilot program, to fund and evaluate innovative approaches to improving outcomes of children receiving Supplemental Security Income and their families.
Encourage Workforce Innovation to Improve Outcomes for People with Disabilities. The Budget provides $125 million to the Departments of Education and Labor for a Workforce Innovation Fund to support reforms of the workforce system, including projects that improve education and employment outcomes for individuals with disabilities. The Vocational Rehabilitation program will contribute $10 million, and use its expertise to help ensure that the Fund invests in innovative programs and evidence-based practices to provide high-quality employment services to individuals with disabilities, including those with significant disabilities. The Budget also provides authority for the Department of Education to use unspent Vocational Rehabilitation State Grants funds to support innovative projects that would focus on improving outcomes for individuals with disabilities.
Support Workers with Disabilities. The Budget provides $24 million to the Department of Labor for the Disability Employment Initiative, which awards grants to build the capacity of One-Stop Career Centers to serve individuals with disabilities. The Budget also proposes a new Disability Insurance Work Incentives Simplification Pilot to make the Social Security work rules more straightforward and allow beneficiaries more flexibility to try to work without fear of losing their benefits.
Reduce Social Security Appeals Hearing Backlog. Disability programs are at the forefront of the Social Security Administration’s (SSA’s) operations. The Budget maintains services to the public, which SSA provides through multiple avenues, including the Internet, over the phone, and in person at hundreds of local offices. In addition, the agency will continue to increase efficiency by holding hearings via video conference for areas of the country with the most cases and increasing the use of online services. By completing approximately 960,000 hearings in 2013, the average processing time will be reduced to SSA’s target level of 270 days in September 2013.
Support Disability Research. The Budget provides $107 million for the National Institute on Disability and Rehabilitation Research (NIDRR). NIDRR conducts comprehensive and coordinated programs of research and related activities to maximize the full inclusion, social integration, employment, and independent living of individuals with disabilities of all ages. NIDRR will continue to support a cloud computing initiative that uses the internet infrastructure to improve technology access through the development, implementation, and delivery of mechanisms that will provide on-demand accessibility for everyone who faces technology accessibility barriers.
Strengthen Anti-Discrimination Enforcement. Even in tough budget times, the substantial investments that have been made by the Administration to strengthen civil rights enforcement against racial, ethnic, sexual orientation, disability, religious, gender, and gender identity discrimination continue in the 2013 Budget. The Budget proposes an increase for the Community Relations Service in the Department of Justice to fight hate crimes and provides a $14 million, or 4 percent, increase over the 2012 enacted level for the Equal Employment Opportunity Commission (EEOC), which is responsible for enforcing Federal laws that make it illegal to discriminate against a job applicant or an employee. This investment will allow EEOC to add staff to reduce the agency’s backlog of private-sector discrimination charges.
Provide Housing for Persons with Disabilities. The Budget provides a total of $150 million for the Housing for Persons with Disabilities Program. Even in tough fiscal times, the Budget continues to invest in the expansion of this program and includes $54 million to fund approximately 1,900 additional units awarded through states for partnerships integrating health care and affordable, supportive housing for extremely low-income persons with disabilities in community-based settings.
...
Improve Effectiveness of Disability Programs. The Administration will conduct a Government-wide review of ways to improve the effectiveness of disability programs through better coordination and alignment of priorities and strategies. This will build on previous efforts that have sought to better coordinate policies and programs across Federal, State, and local governments, the service provider community and employers to improve the effectiveness and efficiency of programs serving individuals with disabilities. While some significant coordination efforts have proven successful, the Administration expects collaboration and innovation to improve efficiency and effectiveness as well as reduce costs even further. The focus of the upcoming review will be to work with agencies authorized to run disability-specific programs and those programs that impact and affect people with disabilities to explore how they can achieve better results for this population by sharing data; defining shared objectives; coordinating goal-setting, integration, implementation and measurement to track progress; and improving management response time when adjustments are needed.
Support the Rights of People with Disabilities Internationally. The Budget provides funding to support the newly-created Disability Office at the Department of State. The office, which is part of the Bureau of Democracy, Human Rights, and Labor, is critical to the Administration’s efforts to: develop a comprehensive strategy to promote the rights of persons with disabilities internationally; ensure that foreign assistance incorporates persons with disabilities; ensure that the needs of persons with disabilities are addressed in international situations; and conduct public diplomacy, including with civil society, on disability issues.

Appropriations

Autism Speaks reports:

Autism Speaks hailed Congress’ vote on a new federal budget bill that appropriates over $230 million for continued autism research, including the first appropriations under the newly reauthorized Combating Autism Act (CAA).

The funding includes $47.7 million for the Health Resources and Services Administration (HRSA), $21.38 million for the national Centers for Disease Control and Prevention (CDC) and funding to be allocated through the National Institutes of Health (NIH). The portion NIH designates for autism research is expected to be close to the prior level of $161 million. Congress also approved a $5.1 million appropriation to continue autism research within the U.S. Department of Defense.

“We're seeing significant appropriations under the CAA in a most difficult fiscal climate, showing bipartisan understanding within Congress of the national public health importance of autism,” said Peter Bell, executive vice president for programs and services. “The funding through the Defense Department is also gratifying, raising the total allocated to this vital program over $35 million.”

 The CAA was reauthorized for another three years by Congress and signed by President Obama on Sept. 30. The funding approved Saturday by Congress maintains the new appropriations for HRSA and CDC at their FY2011 levels, withstanding cuts that affected many other federal programs. Both the HRSA and CDC appropriations could be subject later in the year to an across-the-board 0.189 percent reduction affecting all health programs.

The appropriation for the Defense Department’s Autism Research Program (DoD-ARP) for Fiscal Year 2012 was cut slightly from previous levels, but the program was continued as part of federal autism research efforts. DoD-ARP is administered as a Congressionally Directed Medical Research Program (CDMRP), similar to current programs for breast, prostate, and ovarian cancers. Research that is funded under CDMRP is peer-reviewed, benefits from the direct input of consumer advocates, and is targeted to the most innovative, promising research in the field.

Genetic Research Database

From Autism Speaks:

Today, Autism Speaks joins the National Institutes of Health in announcing the addition of Autism Speaks Autism Genetic Resource Exchange (AGRE) to the National Database for Autism Research (NDAR).

The collaboration creates the world’s largest source of autism research information for use by qualified scientists. It is made possible by the voluntary participation of families across North America.

“This integration will accelerate the pace of autism research, allowing research to proceed faster, more efficiently and cost effectively,” explains Autism Speaks Vice President of Clinical Programs Clara Lajonchere, Ph.D.

While keeping the identity of individual donors confidential, AGRE houses the geneticmaterial and associated medical, developmental and behavioral information from thousands of families with more than one child on the autism spectrum. These large numbers allow researchers to greatly improve the accuracy and reliability of their findings on autism’s causes and risk factors. It also provides a potential source of information for studying rarer subtypes of autism spectrum disorder, which may respond differently to promising new treatments in the discovery pipeline.