The following are pending bills in Congress being monitored by Children’s Cause as having a significant impact on aspects of childhood cancer treatment, access and survivorship. As developments warrant, CCCA will post updates and seek the support and engagement of advocates and families.
Cancer Drug Coverage Parity Act of 2015 (H.R. 2739/S. 1566)
While many drugs used to treat cancer are administered intravenously (IV), increasingly more are being formulated to be taken orally. Unfortunately, these new oral formulations may also be more expensive. Consequently, the goal of this legislation is to ensure that health care insurance coverage for oral drugs is no less than for IV formulations of the same product.
Medical Debt Relief Act (H.R. 2362/S. 2592)
A cancer diagnosis devastates a family -- often financially as well as physically and emotionally. Many families face increased debt as a result of coping with treatment and the costs associated with it. And medical debt is not the same as consumer debt. It is not discretionary. This bill is intended to help provide some relief to those managing medical debts. It prohibits medical debts from going to collections at less than 180 days and requires settled medical debts to be cleared of credit reports within 45 days.
Orphan Products Extension Now, Accelerating Cures & Treatments or OPEN ACT (H.R. 971/S. 1421)
Childhood cancers are, in fact, orphan diseases; which are those with less than 200,000 cases per year. One of the most effective incentives for the pharmaceutical industry to devote time and funding to research and produce products are extensions of their patent or ‘exclusivity’ periods – which provides them longer protection from generic competition. This bill requires the Food and Drug Administration (FDA) to extend by six months the exclusivity period for an approved drug or biological product when the product is additionally approved to prevent, diagnose, or treat a new indication that is a rare disease or condition (also known as an “orphan disease”).
Advancing Hope Act of 2015 (S.1878 / H.R. 1537)
Pharmaceutical companies are incentivized to invest in pediatric cancers when they have confidence in their effectiveness and productivity. This bill extends an existing program – the Creating Hope Act - that creates a market incentive for the development of drugs for rare pediatric diseases through the establishment of a priority review voucher. When a company develops a drug or biologic for a rare pediatric disease and receives FDA approval for that drug or biologic, it also receives a voucher. That voucher provides for FDA priority review for any other drug or biologic, including a large market adult drug or biologic that would otherwise receive standard review. This would result in the other drug or biologic getting to market many months earlier, creating significant value. The voucher is fully transferable and can be sold to other companies.
Palliative Care and Hospice Education and Training Act (H.R. 3119)
In those cases where necessary, we want families and their children to have the best care by the best trained professionals. This would require the Department of Health and Human Services (HHS) to award grants or contracts for Palliative Care and Hospice Education Centers. These Centers must improve the training of health professionals in palliative care and establish traineeships for individuals preparing for advanced education nursing degrees, social work degrees, or advanced degrees in physician assistant studies in palliative care.
National Pediatric Bone Awareness Day (H. Res. 102)
Expresses support for the designation of National Pediatric Bone Cancer Awareness Day. Commends: (1) children battling bone cancer, and their families and friends, for their courage and perseverance; (2) organizations like the Triumph Over Kid Cancer Foundation that raise awareness and encourage the accurate and early diagnosis of pediatric bone cancer; and (3) the researchers, scientists, and health care providers who are dedicated to treating and finding a cure for pediatric bone cancer.