Prepared Remarks of Elizabeth M. Duke, Ph.D.
Administrator, Health Resources and Services Administration

Washington, D.C. 
September 26, 2002

Good Morning. I am Betty Duke -- Administrator for the Health Resources and Services Administration. Secretary Tommy Thompson asked me to convey to you his regrets that his schedule would not permit him to be here for this very important meeting. It is no secret in this city how he feels about the importance of organ transplantation. He speaks passionately on this subject every chance he gets.

In fact, from his first day in office the Secretary vowed to make increasing organ donation a top priority of his administration. And he has delivered on that promise. In April 2001, he launched a national campaign to encourage Americans to “Donate the Gift of Life.” The campaign introduced the “Workplace Partnership for Life,” which asks unions, other employee organizations and employers to educate their personnel, members and volunteers about donation.

Today, I know we are here to talk about the financial barriers faced by patients seeking unrelated donor marrow transplants and I am honored to take part in this dialogue.

The timing for this session couldn’t be more appropriate. This week we celebrate the 15th anniversary of the National Marrow Donor Program. This is fifteen years of giving patients without a matched related donor a chance for a life-saving treatment. Now as we look to the future our mission is clear. We must find ways to sustain the wonderful progress we have made and at the same time improve access to this life-saving treatment for those people still in desperate need.

I know many of you here represent insurance companies. And, I know that, like us, you want good outcomes for the patients you serve. We all recognize that a delay in appropriate treatment can result in a less desired outcome and eventually cost the patient valuable time and the insurance companies more money. That is why meetings like this are important. It is an opportunity for us to learn from each other and broaden our understanding.

Today, I want to give you a brief overview of HRSA’s role regarding transplantation and describe how the National Bone Marrow Donor Registry works. Then I’ll review some of the financial challenges faced by patients and begin dialogue on how to overcome these challenges as we seek to increase access to transplantation. First, let me tell you a little bit about HRSA.

HRSA is the leading HHS Agency for improving access to health care for underserved and vulnerable individuals

We support a network of more than 3,400 community health center sites that provide free and low-cost preventive and primary health care services to some 10 million people each year. A Presidential initiative will expand this network by 1200 sites over five years, eventually doubling the number of patients served.

We fund life-saving treatments and support services for people living with HIV/AIDS through cities, states and communities across the nation.

We partner with States to ensure that babies are born healthy and that pregnant women and their children have access to health care.

We train and place physicians, nurses and other health care providers in isolated rural regions and inner cities – wherever the need is great and resources are few.

And we are responsible for several aspects of transplantation, including the national coordination of organ, tissue and marrow donation activities and the funding of grants and special initiatives to increase donation.

We oversee the Organ Procurement and Transplantation Network -- a computerized list of patients throughout the nation who are waiting for organ transplants -- and a 24-hour-a-day computerized organ placement center to match donors and recipients. More than 71,000 patients awaiting transplants are on the list. The United Network for Organ Sharing manages this network under contract with HRSA.

And we oversee the National Bone Marrow Donor Registry that is operated under contract by the NMDP, a Minnesota-based organization that manages a network of donor and transplant centers that help patients find matching unrelated donors.

For Americans with leukemia and other blood and genetic diseases, bone marrow transplants offer the possibility of a cure. Each year, about 30,000 people are diagnosed with these fatal illnesses. While the National Marrow Donor Program has facilitated over 14,500 unrelated blood stem cell transplants, the numbers of ailing candidates for transplants substantially outnumber recipients.

When doctors see a patient in need of bone marrow transplantation, they first look for donors who are related to the patient. If none are available, doctors then turn to the HRSA-funded National Bone Marrow Donor Registry to search for a suitable, unrelated donor.

The registry contains detailed information on more than 4.7 million potential volunteer donors. And, currently, the NMDP network includes 149 transplant centers – 32 in foreign countries; 16 cooperative registries; and 91 donor centers with 8 located in other parts of the world. Twenty-percent of donors for U.S. patients come from foreign registries, and 20 percent of U.S. donors ultimately help foreign patients.

Our goal at HRSA is to improve patient access to unrelated donor marrow transplants. We are also committed to increasing the opportunities for minorities to find an unrelated matched donor, because we know that racial and ethnic minorities still face many obstacles in this area.

Unfortunately, for a variety of reasons, the National Bone Marrow Donor Registry is underutilized. Many patients do not search, or do so too late in their illness. Others search without success. And then there are the cultural, social, medical and financial barriers that hinder many patients from getting the outcome they desire.

Let’s take a few minutes to look more closely at these financial barriers that keep too many patients from receiving transplants.

As we all know, the financial challenges facing bone marrow transplant patients are substantial. Insurance plans are complex, and there is great variation in coverage depending upon the type of disease, type of transplant, and age of the patient. Annual or lifetime benefit limits can create yet additional barriers. Many insurance companies have a maximum benefit for transplants, such as $100,000, while an unrelated donor transplant can frequently cost $300,000 or more. And transplants that are considered experimental are not covered. On top of these issues, it can take a long time to get a decision and the appeals process is complicated.

And we must realize that some aspects of care are unique to an unrelated donor transplant. For example, there are the search costs, longer inpatient stays, higher incidence of complications, extensive follow-up costs, higher physician costs, home health care, and drug and lab costs.

Searching for a donor is an essential component of the transplantation process. If a patient does not have a suitable donor, the transplant will not happen. Even good coverage for the transplant is incomplete without coverage for search costs. And many insurance companies have a capped dollar amount for the search process while other policies do not cover searches at all.

With regard to clinical trials, there are aspects of patient care received that are not experimental. Therefore there is a need to consider coverage of the “non” investigational aspects of these trials.

Outpatient care presents yet another financial burden for the patient. Here is a typical scenario: After 100 days, the patient returns home; has frequent visits to the local doctor during the first year; has frequent lab tests and regular x-rays; and continues on expensive medications sometimes administered by home health agencies. Keep in mind, this is for patients who are doing well. Patients who experience complications require even more physician visits and medications.

In brief, these are just a few ways that insurance coverage, or the lack of it, complicates the picture for patients who need access to unrelated donor transplants. Our jobs today are to better understand all that is involved in an unrelated marrow transplant and to begin to find ways to remove those barriers that keep patients from receiving the life-saving treatments they so desperately need.

I know this process is ongoing through the teleconferences and conference calls arranged through NMDP’s Office of Patient Advocacy.

In closing, I thank you for your willingness to work with us as we seek to improve patient access to life-saving therapies. 

Go to:  HRSA News Room | HRSA | HHS  | Accessibility | Privacy | Disclaimers | Search | Questions/Comments?