What can I do to increase the likelihood of coverage?
What if my claim is denied after I begin participating in a trial?
Where else can I turn for assistance?

What can I do to increase the likelihood of coverage?

There are several steps you can follow to deal with coverage issues up front when deciding to enter a clinical trial. Along the way, enlist the help of family members and your doctor or other health professionals. You may find the following checklist useful:

• Understand the costs associated with the trial. Ask your doctor or the trial's contact person about the costs that must be covered by you or your health plan. Are these costs significantly higher than those associated with standard therapy? Also, inquire about the experience of other patients in the trial. Have their plans paid for their care? Have there been any persistent problems with coverage? How often have the trial's administrators been successful in getting plans to cover patient care costs?

• Understand your health plan. Be sure you know what's in your policy; request and carefully review the actual contract language. If there's a specific exclusion for "experimental treatment," look closely at the policy to see how the plan defines such treatment and under what conditions it might be covered. If it is not clearly defined, call the plan's customer service line, consult their Web site, and/or write to them. Ask for specific information about clinical trials coverage.

• Work closely with your doctor. Talk with your doctor about the paperwork he or she submits to your health plan. If there have been problems with coverage in the past, you might ask your doctor or the hospital to send an information package to the plan that includes studies supporting the procedure's safety, benefits, and medical appropriateness. This package might include:

  • publications from peer-reviewed literature about the proposed therapy that demonstrate patient benefits;

  • a letter that uses the insurance contract's own language to explain why the treatment, screening method, or preventive measure should be covered;

  • letters from researchers that explain the clinical trial;

  • support letters from patient advocacy groups.

Be sure to keep your own copy of any materials that the doctor sends to your health plan for future reference.

• Work closely with your company's benefits manager. This person may be helpful in enlisting the support of your employer to request coverage by the health plan.

• Give your health plan a deadline. Ask the hospital or cancer center to set a target date for the therapy. This will help to ensure that coverage decisions are made promptly.

• Take advantage of all information resources available to you.

Back to Top

What if my claim is denied after I begin participating in a trial?

If a claim is denied, read your policy to find out what steps you can follow to make an appeal. In the book called What Cancer Survivors Need to Know about Health Insurance, the National Coalition for Cancer Survivorship suggests that you and your doctor demonstrate to the health plan that:

• the therapy is not just a research study, but also a valid procedure that benefits patients;

• your situation is similar to that of other patients who are participating in clinical trials as part of a covered benefit;

• possible complications have been anticipated and can be handled effectively.

Back to Top

Where else can I turn for assistance?

It's never easy to deal with financial issues when you or a loved one faces cancer. Unfortunately, costs can present a significant barrier to clinical trials participation.

The range of insurance issues and health plan contracts makes it impossible to deal with all of them here. You may wish to consult this partial list of publications, organizations, and Web sites for more information:

Publications

What Cancer Survivors Need to Know about Health Insurance

National Coalition for Cancer Survivorship

http://www. cansearch. org/

1010 Wayne Avenue, 5^th floor

Silver Spring, MD 20910

(301) 650-8868

Cancer Treatments Your Insurance Should Cover

The Association of Community Cancer Centers

http://www.accc-cancer.org/main2001.shtml

11600 Nebel Street, Suite 201

Rockville, MD 20852

(301) 984-9496

The Managed Care Answer Guide

Patient Advocate Foundation

739 Thimble Shoals Boulevard, Suite 704

Newport News, VA 23606

(757) 873-6668

email: ndepaf@pinn.net

Publications about Medicare from the Centers for Medicare and Medicaid Services

New Medicare site

http://www.medicare.gov/

Medicare Helpline: 1-800-444-4606

Facing Forward Series: Life After Cancer Treatment (features a section on insurance issues)

National Cancer Institute

Facing Forward or by calling 1-800-4-CANCER

Assistance Programs

Candlelighters Childhood Cancer Foundation

http://www.candlelighters.org

Ombudsman Program

910 Woodmont Avenue, #4607

Bethesda, MD 20814

(301) 657-8401; 1-800-366-2223 (toll-free)

email: info@candlelighters.org

The Ombudsman Program helps families of children with cancer and survivors of childhood cancer resolve a range of problems, including insurance coverage difficulties. Local groups appoint a Parent Advocate who works with the treatment center on behalf of families.

Medical Care Management Corporation

http://www.mcman.com/

5272 River Road, Suite 650

Bethesda, MD 20816-1405

(301) 652-1818

email: mcman@mcman.com

Working for a range of clients, including health plans, employers, and patients, MCMC conducts independent, objective reviews of high-technology medical care cases to assist in decision-making. While it does charge for its services, MCMC also offers a volunteer program for those who cannot afford to pay.

More Information Resources

OncoLink, a service of the University of Pennsylvania Cancer Center.
http://www.oncolink.com/

In addition to general cancer information, this Web site features a section on financial information for patients (http://www.oncolink.com/resources/resources.cfm?c=6). Among the topics: viatical settlements, life insurance, a glossary of financial and medical terms, and news about billing and insurance.

AAHP-HIAA

http://www.aahp.org/

601 Pennsylvania Avenue, NW

South Building, Suite 500

Washington, DC 20004

(202) 778-3200

In October 2003, the American Association of Health Plans merged with the Health Insurance Association of America to form the AAHP-HIAA, the national trade association representing the private sector in health care.

• Consumer Information

American Academy of Family Physicians (AAFP)

http://www.aafp.org/

P.O. Box 11210

Shawnee Mission, KS 66207-1210

The AAFP's mission is to preserve and promote the science and art of family medicine and to ensure high-quality, cost-effective health care for patients of all ages.

• State Health Insurance Counseling Programs

National Association of Insurance Commissioners (NAIC)

http://www.naic.org/index.htm

2301 McGee Street

Suite 800

Kansas City, MO 64108-2662

• State Insurance Department Web Sites

Back to Top

< Previous Section  |  Next Section >