Federal pricing program for rare drugs in jeopardy

The doctors, nurses and other clinicians at Children’s Hospital Boston treat children from all over the world, many of whom are receiving care for serious and complex pediatric diseases and conditions. Prescription drugs are often a vital part of treatment, but due to the uniqueness of the diagnoses of many of our young patients, these medicines are often quite costly.

To help keep prices of these drugs within manageable limits, the federal 340B Drug Pricing Program requires that outpatient prescription drugs be sold at discounted prices to safety-net institutions, like Children’s, which serves a high percentage of low-income patients.

Unfortunately, during the passage of heath reform last year, an unintentional error resulted in the exclusion of “orphan drugs,” or drugs used to treat rare medical conditions, from the 340B program when used by children’s hospitals. Children’s uses orphan drugs on a daily basis and excluding them from the 340B program poses significant problems for the hospital’s outpatient pharmacy and could jeopardize Children’s eligibility to participate in the 340B program altogether; twenty eight other hospitals around the country are facing a similar situation. (Click here for a list of children’s hospitals participating in the 340B program)

It’s a scary prospect, but Congress can rectify the problem. Corrective language to ensure that orphan drugs are included in the 340B program for children’s hospitals has already passed in the U.S. House of Representatives and many are hopeful it can do the same in the Senate before the year’s end. Massachusetts Senators John Kerry (D) and Scott Brown (R) have already been active in their support of a language change, and now we are asking for child advocates who live in states other than Massachusetts to call the their Senators and let them know how important fixing the 340B issue is for children’s hospitals.

Here are a few talking points to use when calling your Senators’ offices:

  • Ask the person who answers the phone if you can leave a message for the Senator regarding a children’s health care policy matter.

  • Explain that you support Children’s Hospital Boston. Offer a brief description about why the hospital is important to you/your family. If you travel from out of state to receive care at Children’s, please mention this.

  • Tell him/her that you understand that a drafting error in health reform has threatened the ability of Children’s Hospital Boston and 24 other children’s hospitals in the country to participate in the 340B program, which allows safety-net providers to purchase outpatient pharmaceuticals at a discounted rate.

  • If your Senator is a Democrat, ask: “Will Senator _______ contact Majority Leader Harry Reid and let him know that passing a fix to 340B issue before the end of the year is important?”

  • If your Senator is a Republican, ask: “Will Senator _______ contact Minority Leader Mitch McConnell and let him know that passing a fix to the 340B issue before the end of the year is important?”

For a state-by-state listing of U.S. Senators, including contact information for their offices, please click here.

As we move forward to implement meaningful health care reform, child advocates must stay vigilant in our efforts to ensure optimal outcomes for children and those who provide them with care. Your help in rectifying this issue is greatly appreciated.

Have you called your Senator’s office about 340B? Do you feel you were successful in imparting how important this issue is? If so, please tell your story in our comments section, as it may be informative to others hoping to make a difference in the lives of children.