Going on a clinical trial can be a life changing decision, and from the outside it can be very difficult to understand how a trial is run, what the risks are, and what the potential benefits might be.
Consider a Clinical Trial
Talk with your medical team about this option. Some good questions to ask are the following (questions are from NIH.gov)
- What is the purpose of the study?
- Who is sponsoring the study, and who has reviewed and approved it?
- What kinds of tests, medicines, surgery, or devices are involved? Are any procedures painful?
- What are the possible risks, side effects, and benefits of taking part in the study?
- How might this trial affect my daily life? Will I have to be in the hospital?
- How long will the trial last?
- Who will pay for the tests and treatments I receive?
- Will I be reimbursed for other expenses (for example, travel and child care)?
- Who will be in charge of my care?
- What will happen after the trial?
This site provides general information. Please talk to your own doctor to make healthcare decisions that are right for you.
Clinical Trial Finders
Clinical Trial Financial Assistance
Insurance companies generally will cover what is considered the standard of care for a disease. However, if the treatment is experimental or investigational, a patient may not receive insurance coverage. Sometimes hospitals, research centers and pharmaceutical companies will cover the cost of treatment in a clinical trial. But often, trials require additional tests, doctor visits, travel, childcare costs and other expenses that are covered neither by the trial sponsors or the patient’s insurance. In these cases, patients are responsible for the costs. There are organizations that provide help for these costs though and we have outlined them on this resource page.
21st Century C.A.R.E.
21st Century C.A.R.E. provides patients immediate financial assistance for incidental expenses related to active cancer treatments. This allows the patient to put their focus where it belongs – on beating the disease.
The eligible patient must be referred by a physician to be considered for assistance. Applications are processed without delay. Once the application is approved, we can then offer patients financial assistance for incidental expenses related to: transportation to and from treatments, follow-up visits related to cancer-care, childcare during treatment, temporary housing due to geographical distance from the treatment center, medical supplies and much more.
CancerCare
Offers limited assistance for cancer-related costs, and our professional oncology social workers can help you find resources.
CancerCare Co-Payment Assistance Foundation: 1-866-552-6729
The CancerCare Co-Payment Assistance Foundation is a not-for-profit organization established in 2007 to address the needs of individuals who cannot afford their insurance co-payments to cover the cost of medications for treating cancer. The Foundation is proud to be affiliated with CancerCare, a national not-for-profit organization that has provided free professional support services including counseling, education, financial assistance and practical help to people with cancer and their loved ones since 1944.
PAN Foundation
PAN Foundation believes that high deductibles and co-pays should not prevent people with life-threatening, chronic and rare diseases from getting the medications and treatment they need. That’s why PAN Foundation offers the fastest, most dependable way to help patients pay for their out-of-pocket costs.
Patient Advocate Foundation
National Underinsured Resource Directory – Patients that have current health insurance but are still struggling to meet the out-of-pocket cost demands are considered underinsured.
Cancer Financial Assistance Coalition
A list of member organizations that provide financial and other assistance.
Social Security Benefits for When You Have Cancer
Applying Social Security Benefits When You Have Cancer
Illumination Foundation, the Recuperative Care Center
- A safe discharge plan for the homeless patient
- For those ready for discharge from the hospital, but have no place to go
Medicare
Both Medicare and the National Cancer Institute provide information on Medicare coverage for clinical trials. Medicare will cover the cost of a trial to diagnose and treat cancer.
1–800–633–4227 (1–800–MEDICARE)
1–877–486–2048 for hearing impaired
For everything you need to know about Medicare:
Your Ultimate Guide to Medicare
National Cancer Institute
NCI fact sheet on Medicare coverage for clinical trials:
Also from NCI for non-Medicare patients:
Appealing After a Rejected Claim
Sometimes an insurance company will reject a claim for routine tests like blood work (CBC or Complete Blood Count) or an X-ray or CT scan because they’re being done to monitor an “experimental/investigational” treatment rather than standard-of-care treatment. Patients will want to stay in close contact with their physician to receive assistance in the appeals process.
If coverage is rejected, this website can help you navigate the appeals process
Federal Financial Assistance Programs
Beneficiaries of TRICARE, the Department of Defense’s health program, can be reimbursed for the medical costs of participation in NCI-sponsored Phase 2 and Phase 3 cancer prevention (including screening and early detection) and treatment trials:
The VA, Dept. of Veterans Affairs also has an agreement with the NCI:
The NCI/VA Agreement on Clinical Trials: Questions and Answers
Other Organizations That Can Help
While the cost of diagnosis and treatment for clinical trials often is covered, related services may not be covered. There are organizations that can help.
Susan G. Komen
The Komen Foundation is providing generous grants through PAF, the Patient Advocate Foundation, for women with breast cancer. Patients needing assistance can call (855) 824-7941 or learn more about the eligibility guidelines at www.patientadvocate.org/gethelp
AACR
AACR, The American Association of Cancer Research, is an excellent, comprehensive resource to learn about financial assistance and resources. On the AACR site, patients can link to many organizations to help with practical support, e.g. non medical expenses, like transportation, hotels, wigs and so on.
LLS
Leukemia and Lymphoma Society for all blood cancers: LLS works with CFAC, Cancer Financial Assistance Coalition
Linda Creed Breast Cancer Foundation
Will help with non-medical expenses
Oklahoma Brain Tumor Foundation
OKBTF is a nonprofit advocacy organization that provides outpatient behavioral health services for Oklahoma families who have a family member, child or adult, who have been diagnosed with a brain tumor. We are dedicated to meeting the needs of Oklahoma families, caregivers and patients affected by primary brain or central nervous system tumors. We work to provide for needs through programs that address families emotional, physical, and spiritual needs.
MyMultipleMyeloma
Multiple Myeloma website provides a one-stop shop list of links to financial resources, many of which are listed on these pages.
HelpWithPayingBills.org
Helpwithpayingbills.org is a site that helps low income families with finding financial assistance programs. Their comprehensive directory lists assistance programs that help with utility, energy, rent and medical bills. You can view bills assistance programs by state, popular cities, or popular counties.
The Simple Dollar
The Simple Dollar’s, “Guide to Paying for Cancer Treatments” discusses payment options, important questions to ask and recommendations from experienced medical professionals.
Bankrate
Bankrate’s “Cancer costs: How to manage housing expenses during treatment” sheds light not only on how to simply handle treatment costs but also how to manage living expenses that may become overwhelming.
Questions to Ask
Before enrolling in a clinical trial, patients should ask questions about cost coverage:
- What exactly are the additional costs if I enroll in the trial?
- Does my insurance cover any of these costs?
- Is the experimental drug cost covered?
- Will I have to travel for this trial? Where and how often?
- Will I be reimbursed by the trial sponsors for any additional costs?
This site provides general information. Please talk to your own doctor to make healthcare decisions that are right for you.
