A congressional caucus is a group of members of the United States Congress that meets to pursue common legislative objectives. As many of you heard last week, it was announced that the paperwork has been submitted to create the Rare Disease Caucus in the United States House of Representatives.
Leaders of the bipartisan caucus will include Congressman Fred Upton [R – Michigan’s 6th District], who also sits on the Committee on Energy and Commerce, and Congressman Joseph Crowley [D – New York”s 7th District], who also sits on both the Committee on Foreign Affairs and the Committee on Ways and Means. More information about will be available to the public in the next few weeks.
There will be no shortage of legislative activity that this caucus can support. One example would be the Medical Foods Equity Act (HR 4926), lead sponsor Tammy Baldwin (D-WI). The bill would require all insurance companies to cover the cost of medical foods. Medical foods were defined in the 1988 Orphan Drug Act Amendments; foods which are specially formulated and intended for the dietary management of a disease. Certain types of formula and IV packs are important for chronic disease management when normal diet and nutrition alone are insufficient.
I caught up with Richard Michaux last week. Richard’s granddaughter Tia has Phenylketonuria (PKU), and he has helped create a 501(c)3, the Michaux Family Foundation for PKU, to help direct funds to PKU research. Richard is also President of the Board of Directors for the National PKU Alliance (NPKUA). The Medical Foods Equity Act is particularly important to families impacted by PKU:

Phenylketonuria is a very rare, inherited, metabolic disorder that prevents people from metabolising proteins. In the USA there are roughly 9000 persons with PKU since Newborn Screening (NBS) initiated (est. 210 live births per year X 43.5 years [1965]). If left untreated it can result in severe mental retardation. Fortunately, all children born in the United States are tested for PKU and treatment is often handled through a very controlled diet. The Medical Foods Equity Act would provide coverage of formula, and foods modified to be low in protein, for CHILDREN AND ADULTS with PKU and other inborn errors of metabolism.

UPDATE: Christine Brown, Executive Director of the National PKU Alliance, shared with us a short documentary that compares untreated PKU to treated PKU. The doc was produced by a dietician in California. Please click here to check out the California Coalition of PKU and Allied Disorders (CCPKUAD).

PK-Who from Tucker Parris on Vimeo.
The Medical Foods Equity Act would:

  • Require all insurance companies to cover the cost of medical foods (both formula and food modified to be low in protein) for all children and adults with inborn errors of metabolism. This includes federal insurance programs, such as Children’s Health Insurance Program, Tricare, Medicaid and Medicare.
  • Require that insurers cover the medical equipment and supplies needed to administer medical foods.
  • Cover the use of pharmacological doses of vitamins and amino acids.
  • Health insurance plans governed by the Employment Retirement Security Act (ERISA) would not be exempt.
  • Provide coverage for both children and adults.
  • The Secretary of Health and Human Services would determine the minimum yearly coverage for all health insurance plans.
  • These new federal minimum standards would not pre-empt state standards that require a higher minimum standard.
  • The Medical Foods Equity Act is endorsed by over 40 organizations, including the American Academy of Pediatrics.

The NPKUA Advocacy Committee is launching a campaign right now to identify House co-sponsors for H.R. 4926, hoping for at least 100 co-sponsors by August 1. Click here: NPKUA Advocacy Committee Messaging
The videos posted previously may still be viewed on YouTube:
PKU and Us [Winner of the Rare Disease Day 2009 Video Contest]
A Doc on Aaron James who has PKU, by his sis Clare

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