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Living With Cancer

Advocacy

Finding a Drug that's in Development and not Currently Approved

By definition, drugs available for compassionate use are not yet approved by the FDA. The easiest way to get access to an unapproved drug is through a clinical trial being conducted on that drug. When you hear about a new drug, the first step is to see if the patient is eligible for an ongoing clinical trial. If the patient is not eligible for the clinical trial, then it's appropriate to pursue the possibility of compassionate use.

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Web sites and telephone services

All trials testing effectiveness for cancer are required by law to be listed in www.clinicaltrials.gov. Generally, Phase I and many Phase II trials do not examine effectiveness and may not be listed. NCI's clinical trial listing can be found here.

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News Reports

Because of the many, many outlets for news - both print and electronic - there is much more reporting on health news than there was even five years ago. The quality and depth of these reports ranges from poor to excellent. The inconsistent quality of news reports on a new, unapproved drug can cause confusion for the reader or listener. And if that reader or listener is a cancer patient, the confusion can lead to turmoil and frustration.

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Patient's Physician

The patient's physician will often be aware of new treatments and drugs that are being developed for your disease. Ask him/her about the clinical trials that are underway for your disease.

REMEMBER: Physicians rarely have the time to follow-up or do searches for clinical trials for the patient. The patient or family member will need to follow-up on suggestions the physician may have. Keep in mind, that physicians have varying views on clinical trials and compassionate use. Their opinion is important but the patient makes the ultimate decision about treatments.

Patient Advocacy Organizations

Our Cancer Resources section contains a list of cancer advocacy organizations. Some advocacy organizations maintain a list of drugs in development on their websites, along with information about current research.

Medical Journal Articles

If you're good at deciphering medical lingo, you can search for medical journal articles about treatments for a particular type of cancer, or for those about a specific medication. The National Library of Medicine's (NLM) database, which includes millions of articles, is at www.nlm.nih.gov. The specific address for searching the database is www.ncbi.nlm.nih.gov/pubmed.

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