WASHINGTON, DC - The Energy and Commerce Subcommittee on Health today held a hearing to consider four more commonsense bills to strengthen the Medicaid program. The subcommittee last week discussed six additional bills in its ongoing commitment to strengthen Medicaid.
Subcommittee Chairman Joe Pitts (R-PA) said, “Given the scope of the [Medicaid] program and its impact on millions of Americans’ lives, Congress and States have a responsibility to ensure that the program is modernized to better serve some of our nation’s neediest citizens. Congress can make incremental improvements to this 50-yearold system, in a way that respects taxpayers, empowers patients, and promotes more holistic, patient-centered care."
Rep. Chris Collins (R-NY) spoke to draft legislation he has authored, the Medicaid DOC Act. This bill would require state Medicaid programs that operate fee-for-service and/or primary care case management programs to include a directory of physicians who served Medicaid patients in the prior six months on the Medicaid program’s website. Collins said, “This bill is an example of where commonsense meets good government."
Tim Clontz, testifying on behalf of the National PACE (Program of All Inclusive Care for the Elderly) Association, explained, “The PACE Innovation Act would allow CMS to test the PACE model with new populations such as younger people with disabilities, individuals at-risk for needing nursing home care and others. This much needed legislation would address serious gaps in our current health and long term care delivery system, and would allow PACE organizations to offer high-quality, fully-integrated care that allows vulnerable populations to maintain their optimal health, receive much-needed services, and to live independently in the community."
Richard Courtney, President of the Special Needs Alliance, spoke to the importance of H.R. 670, the Special Needs Trust Fairness Act. This bill would amend the Social Security Act to allow individuals to set up their own special needs trust. Currently, the law only allows family and legal guardians to establish a special needs trust, even if they are using the individual’s money. Courtney said, “The disparity in the law creates an equality and fairness issue. One should have the right to contract if one has the requisite legal capacity."
Dr. Michael Boyle, Vice President of Therapeutics Development for the Cystic Fibrosis Foundation, spoke about H.R. 209, the Ensuring Access to Clinical Trials Act. This bill would allow individuals to participate in clinical trials for rare diseases and conditions without counting the income earned from these trials against their eligibility for Medicaid and Supplemental Security Income.
Boyle shared the story of one of his former patients who could have benefited from H.R. 209:
“The particular individual that comes to mind when I think of the Ensuring Access to Clinical Trials Act is a young man with cystic fibrosis by the name of Michael that I was caring for in 2009 prior to the original passage of this law. Mike had significant lung disease from CF, but for many years had made time to participate in clinical trials to help speed the development of desperately needed new therapies. Yet in 2009, when a trial of a very promising new therapy called ivacaftor started and was looking for CF clinical trial participants, Mike did not participate. Not because he didn’t want to - in fact, he desperately wanted to enroll in the trial of a drug which was later found to be the most effective drug that has ever developed for his type of CF - but because he had evaluated his finances and was afraid that the modest payment of approximately $750 associated with participation in the trial would put the Medicaid and SSI support on which he was completely reliant in jeopardy. Mike even volunteered to participate in the trial without payment, but this is not allowed by Hospital Review Boards for the vast majority of clinical trials, including this one. Approximately 4 months after deciding not to enroll because of financial concerns, Mike died unexpectedly from complications of CF."
Read complete witness testimony and legislative text online HERE.
