A second chance at life is our first priority

If Myra Jacobs were a venture capitalist and not a health professional, she'd have made the cover of Fortune magazine years ago. In 1990, Jacobs and the co-founders of the National Bone Marrow Transplant Link tapped a virtually invisible market and opened the information floodgates to a chronically underserved group: people considering bone marrow transplants.

The organization they created insures access to both educational and emotional support, neither of which have been easy to come by in the past. The LINK offers one-stop shopping to transplant patients in need of anything from a phone number to a sympathetic ear. And the thousands of individuals worldwide helped by the LINK thus far can testify to its success.

The idea for a national organization grew out of a far smaller project, albeit one that has become a hallmark of the LINK. It was more than a decade ago that hospitals began developing bone marrow transplant programs and hiring transplant specialists, notes Jacobs, nbmtLINK Executive Director.

"There was a group of us who could see this trend happening, but what we all noticed was that there were not a lot of resources out there for people."

"One of the biggest complaints we'd hear (from the transplant patients) is, 'We've made 10 phone calls and no one can help us,'" adds Pat Steele, RN/BSN, former coordinator of the bone marrow transplant program at the University of Michigan Comprehensive Care Center and now with Karmanos Cancer Center.

As a remedy, the group began assembling relevant bits of information from dozens of disparate sources and later that year published a booklet. The Resource Guide for Stem Cell Transplant, Including Bone Marrow, Periperal Blood, and Cord Blood: Friends Helping Friends not only lists the addresses and phone numbers for support networks, donor information and financial resources, but also explains the transplant process, discusses practical issues and emotional concerns.

A transplant, Steele points out, "is a process filled with emotional, financial and psychological stress." Patients are faced with the decision as to whether they want a transplant or not and, if so, what type of transplant. Though most insurance companies now cover the cost of the actual transplant, Steele says, they rarely pay for the costs of the donor search and then procurement of the marrow.

Transplant patients may relocate to new cities during the procedure for extended periods of time. They struggle with the emotional traumas of leaving their families, homes and jobs. Talking with someone who's undergone a similar experience can relieve a patient of much anxiety.

The LINK provides training materials for peer support volunteers, who in turn provide emotional support to prospective patients. Volunteer medical and health professionals are also available to answer technical questions. But offering medical advice is taboo. Those questions are left for a patient's doctor to answer.

With refined treatments, new medications, important clinical trials and research studies, the use of bone marrow/stem cell transplant continues to expand. The ability to isolate and collect stem cells has revolutionized the transplant process. The use of umbilical cord blood and non-myeloablative transplants has also opened up new possibilities. As technology advances, patients and families can realistically look forward to brighter tomorrows.

• An extensive volunteer peer support program
• Resource referrals for patients and health professionals
• Educational booklets:
  • Resource Guide for Stem Cell Transplant, Including Bone Marrow, Peripheral Blood, and Cord Blood: Friends Helping Friends
  • Survivors' Guide to a Bone Marrow/Stem Cell Transplant: What to Expect and How to Get Through It
  • Caregivers' Guide for Bone Marrow/Stem Cell Transplant: Practical Perspectives
• A comprehensive Web site (www.nbmtlink.org)
• Telephone support groups
• Educational forums
• Support group for pre- and post-BMT patients (Detroit, MI)
• Video: The New Normal: Life After Bone Marrow/Stem Cell Transplant, a remarkable video about six transplant survivors and their caregivers.

Would You Like to Provide Telephone Support to a Current BMT Patient or Caregiver?

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