Nancy Davenport-Ennis battled cancer and also watched her close friend Cheryl Grimmel battle both cancer and her insurance company to cover her treatments. After Cheryl died in December 1994, Nancy decided to take action. On the night of Cheryl's funeral, Nancy and her husband, Jack, made business plans for two organizations. The Patient Advocate Foundation is a nonprofit foundation which provides patients with case managers and attorneys to resolve insurance problems, as well as volunteer oncology nurses and doctors to answer patients' questions. The National Patient Advocate Foundation is a lobbying organization that works to improve healthcare access through policy initiatives at the state and federal levels.
We talked to Nancy about how patients can work for themselves.
You are a cancer survivor and you started this organization after your best friend lost her battle with breast cancer. When someone finds out they've been diagnosed with cancer or another serious illness, what is the first step in being your own patient advocate? What steps should you take to ensure you're being pro-active in your treatment?
If you're diagnosed with cancer, the first step is to get a second opinion. Make certain that the protocol that was described to you and your doctor's diagnosis is reaffirmed by another physician that's a specialist in the field of cancer. That's a very important statement. Cancer is sometimes diagnosed by doctors who are not oncologists. Urologists are an example of doctors that often treat male cancers. We often advise that you get a second opinion from an oncologist. As your therapy is being described to you, make notes, keep a diary.
If you are used to going online, go online and try to research your disease. When you go online, go to clinicaltrials.gov to see if there is a trial going on for the disease and the condition that's been described to you. If the treating physician has described to you a clinical trial, investigate the trial, find out if it's NCI-approved (National Cancer Institute), Department of Defense-approved, Veteran's Affairs-approved. Is it in trial in a hospital; if so, if the industry is putting it on.
Reach out to a nonprofit disease group that has the kind of disease that you do and see what information they have about treatment options.
Find out what your insurance provides for and that means you may have to go to the human resources department and get a copy of your insurance plan. If you're troubled by what it says or your don't understand what it says, either go see a human services representative in your own company to get them to explain the health care coverage to you or contact Patient Advocate Foundation, we interpret plan language for patients all day every day. Your doctor's office will sometimes have a person on the staff that can also help you understand what your insurance provides for.
If you find there's a disconnect between what your insurer is going to pay for and what your doctor recommends that you have, contact an organization like ours to see if we can find a resolution for filling the gap. Be certain that as the patient, you find out what your financial responsibilities are going to be. What is the time commitment that you've got to make?
Address with your family what your treatment is going to be and make certain that you're informing them. If you're going through the process of cancer treatment, you're going to need their love and support. It's important that they're informed early on as to what you're getting ready to do.
Get organized. Organize your childcare. Organize your travel. Organize who's going to be helping you with tasks at home, with food etc. If you are employed, discuss with your employer if you're going to need time off or if you're going to be away.
My advice to patients is when you enter cancer therapy, try to live your life as completely normal as you possibly can. If you're used to taking a walk every day, if you don't go but one block, go out and take that walk. If you're used to answering emails every day, continue that. It's a mental step in your recovery. Hold onto "normal" as much as you can.
If someone has any questions or needs any help along the way, they can contact the Patient Advocate Foundation. We'll help them through the whole process.
Editor's note: Health advocacy companies are a growing business that can save consumers and businesses money by negotiating lower healthcare fees. Other organizations that specialize in health advocacy include Health Advocate, Inc. and Pinnacle Care. You can discuss more options with other iVillage members on the Hot Topics in Health message board.
Nancy Davenport-Ennis battled cancer and also watched her close friend Cheryl Grimmel battle both cancer and her insurance company to cover her treatments. After Cheryl died in December 1994, Nancy decided to take action. On the night of Cheryl's funeral, Nancy and her husband, Jack, made business plans for two organizations. The /doctor_89.jpg "ulcerative colitis tips")
