What motivated you to start the Patient Advocate Foundation in 1996? What did you hope to accomplish through PAF?
Nancy: My motivation was that I could not believe you could be burdened with such a serious diagnosis as cancer in the United States of America and basically not have any resources available to help in handling the business side of the diagnosis. Yet if you cannot solve the business side of the diagnosis, you cannot get therapeutic intervention.
As I saw what my friend Cheryl went through, I kept thinking that what people in America need is a business partner to help them get proper care. People need to know that when an insurance company says, ‘We are denying coverage for the benefit your doctor has prescribed,’ an organization is in place with a professional staff to take on and win an appeal or facilitate pre-authorization of a claim. Today, PAF has a division of full-time clinical personnel to solve these problems.
I also knew that people with cancer face devastating medical bills that can lead to the loss of everything for which they have worked their entire lives. More than 60% of the people who call us at PAF for help face a medical debt crisis that is moving them toward bankruptcy. Ninety-three percent of these people are insured, working men and women.
My vision was to establish a network of professional case managers including debt-credit counselors able to negotiate charity care with hospitals and practice groups and write-offs with lenders that would at least allow patients to defer payments of a loan’s principal. These counselors should also be able to negotiate with mortgage lenders to extend the term of a mortgage and alleviate payments due over the next 60, 90 or 120 days.
I knew many cancer patients could not afford the pharmaceutical agents prescribed to them. I thought there had to be a remedy beyond telling gravely ill patients and their families to make 100 phone calls to find free drugs. I knew we needed a staff of professionals who could qualify people for free drugs expeditiously to bring emotional and practical relief to these families. The staff also needed to expedite applications to government agencies, such as Social Security for disabled patients and Medicare for older patients. If you look at PAF today, that’s exactly who we are and what we do.
What do you see as your greatest achievement through PAF?
Nancy: Improving the quality of life for literally hundreds of thousands of families in the United States and reinforcing to physicians and nurses throughout the United States the message that when they need help for their patients on the business side of therapy or early diagnosis, we are here to be their business partner. We are here to solve the insurance issues, whether patients are insured or uninsured. We are here to solve patients’ social service needs. And we are here to create a resource center for physicians, hospitals, nurses and consumers.
One of our greatest accomplishments was in setting up a live chat line. Today, 35% of all users of that chat line are health- care professionals contacting our health-care professionals to say, ‘This is where my case is. Do you have a recommendation for the next step to get the problems solved?’ To me, that’s the best kind of advocacy because then everyone is doing what he or she does best and we become a support to that process.
We have also been aware of the at-risk populations in the United States. We created a national African-American outreach program six years ago and developed literature and information on our Web site for that population. We did the same things for Hispanic populations. When you visit the education section of our Web site, you can choose to read any of our 24 publications in English or Spanish.
Note: For more information about the Patient Advocate Foundation and its services, call 800-532-5274 or go online to www.patientadvocate.org.