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|Newsletters: Help End Shortages|
Help End Shortages
Join us in signing the petition Oley member Ann Weaver has initiated to urge Congress to end shortages.
Last year, the FDA Safety and Innovation Act was successfully passed through both houses of Congress. This legislation requires manufacturers to notify the Federal Drug Administration (FDA) when and if drug or device shortages might be anticipated. The medical community was assured that FDA-approved drugs and medical devices would again be available for patients/consumers.
This was very good news to the entire Oley community—to consumers, clinicians, and members of industry alike. However, much to everyone’s surprise and dismay, shortages of critical drugs have continued, and in some cases increased, in spite of the new legislation. This is a critical problem, especially for home parenteral nutrition (HPN) consumers, who are dependent upon these same drugs for vital nutrients and for whom resources are limited in the best circumstances.
Shortages in HPN
Industries providing HPN solutions in this country are managing in day-to-day, triage mode in order to provide the prescribed and necessary nutrients to their consumers. The shortages are not limited to one or two HPN ingredients, but have affected virtually all of the ingredients in HPN. Some drugs are short temporarily or intermittently, while others have been in short supply throughout the crisis. These same shortages have not occurred at all or have occurred with much less frequency and duration in other countries over the last few years.
One pharmacist stated that sterile water was the only ingredient that has not been affected by shortages. This means the HPN supply industry must make decisions about who receives the medicine they need. Who would have guessed that after sweating through the trials of effective medicines, safe techniques, insurance coverage issues, and efficient delivery systems, we would now have to consider availability of needed and sometimes quite common ingredients in this life-saving area of medicine.
“Reach and Teach”
On April 5, Darlene Kelly, MD, PhD, FACP, (recently retired from the Mayo Clinic and now Oley’s Science and Medicine Advisor), Elizabeth Tucker (long-term HPN consumer and advocate), Harlan Johnson (my husband, and an advocate and caregiver), and I (a long-term consumer and Oley Board President) met with the Health Care staffer in Senator Amy Klobuchar’s office in Minnesota. Oley Executive Director Joan Bishop joined us by phone. Senator Klobuchar had previously cosponsored one of the Health Care shortage bills and has been an active supporter of quality health care legislation. We spoke with her aide, Adam Schiff, for almost an hour during a prescheduled appointment about our concerns, and we left written material for him to share with Senator Klobuchar.
Our goal was to educate just one of the one hundred senators and to also ask for effective direction to continue our efforts. Adam was receptive to our comments and to our prepared materials. He provided some important recommendations to “reach and teach” as many senators as possible. He said personal stories from consumers are the most effective approach. He also stated that we should target current members of the U.S. Senate Committee on Health, Education, Labor and Pensions, which is the group to decide which bills get attention from the rest of the Senate. Committee members are listed on www.help.senate.gov. or call (800) 776-OLEY for a list.
I have personally benefited from a regular and reliable HPN industry for almost thirty-three years. While my gut might be artificial and my nutrition may be unique, regular access to needed HPN ingredients allows me to live a healthy and fairly normal lifestyle. I am dependent upon the continued availability of all the ingredients in my individual “recipe” and I will continue to attempt to educate those members of Congress who need to provide leadership and boundaries to the drug companies involved. If our needs cannot be met through legislation, perhaps we need to look for alternative, quality standards. Please consider joining our efforts. It is our voices that will get their attention!
LifelineLetter, May/June 2013