The witnesses testifying at a September 18, 2015, Energy and Commerce Committee hearing on four different Medicaid bills all offered moving stories about someone they know whose lives will or would have been affected by the pending legislation. These bills cover a wide range of topics, but all intend to improve access to care for Medicaid beneficiaries.
The Ensuring Access to Clinical Trials Act of 2015 (H.R. 209) would remove the sunset provision of a similar act passed in 2009 that creates an income exclusion provision for up to $2,000 received in exchange for participation in clinical trials. According to Dr. Michael Boyle, Vice President of Therapeutics Development for the Cystic Fibrosis Foundation, current clinical trial participants and future candidates will be forced to discontinue or decline to participate for fear of losing their Supplemental Security Income (SSI) or Medicaid benefits due to income restrictions if the exclusion is allowed to expire on October 5, 2015. In his testimony, Boyle pointed out that precision medicine allows very targeted and specific therapies to be developed to treat rare diseases and specific groups of patients. The possible trial population for these drugs is limited by the rarity of the disease and the specificity sought. Further reducing the pool of trial participants due to fears of losing vital benefits will limit scientific advancements and efforts to cure these devastating diseases. The Senate has already passed identical legislation.
H.R. 3243 would expand the Program of All-Inclusive Care for the Elderly (PACE) to include those with disabilities under age 55. PACE provides comprehensive in-home care to those who are 55 or older who would otherwise require institutional care. Tim Clontz of the National PACE Association testified about the importance of allowing those with disabilities to remain in their homes, surrounded by their loved ones, as opposed to the strain that moving into a nursing facility puts on both the patient and their families. When asked how PACE would adapt to serving younger patients, Clontz admitted that creative solutions would be necessary but hopes to use pilot programs to determine the best models of care. While some larger programs may be able to create a division dedicated to patients under 55 years of age, he noted that programs in more rural areas would likely need to use existing resources to treat the new patient population.
Special needs trust
The Special Needs Trust Fairness Act of 2015 (H.R. 670) would allow for non-elderly disabled individuals to establish special needs trusts on their own behalf. Special needs trusts, unlike most other trusts, are not considered an asset for Medicaid eligibility determinations. Currently, only parents, grandparents, a legal guardian, or a court may establish a special needs trust on behalf of a non-elderly disabled individual. Richard Courtney, President of the Special Needs Alliance, testified before the committee on the bill and stated that these individuals are mentally capable of making a contract and should be allowed to do so to protect their interests. He noted that some courts have been hesitant to establish these trusts, leaving those without surviving parents little recourse.
The Medicaid Directory of Caregivers Act would require state Medicaid programs to establish an electronic list of physicians that accept Medicaid patients. This list would include doctors who have billed Medicaid in the last six months. The Government Accountability Office (GAO) found that Medicaid enrollees encounter difficulties in attempting to access various types of specialty care, and the Centers for Disease Control and Prevention (CDC) noted that physicians are less likely to accept Medicaid patients than those covered by Medicare or private insurance. This updated list of providers accepting Medicaid patients would reduce the time and effort required to find a provider.