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Ebola and Life-Threatening Diseases: Should You Take Untested Medicines?

If a condition, even Ebola, threatens your life, be courageous, be informed, and be prepared to make a decision that could help you survive.
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Ebola and fear of Ebola are spreading. Although the disease was discovered in Zaire in 1976, only small outbreaks have occurred and then subsided until this current crisis. It is now estimated by the CDC that up to 1.4 million people will have contracted Ebola by January 2015! But many more worldwide will be fearful of the spread of this disease. Even my family is worrying about planned travel to Europe and the Mediterranean, since everyone fears who else might be traveling who has been in Africa! Ebola is a global security threat.

Much of the fear of this disease centers on the lack of specific treatment for the illness. Although about 29 percent of people who get Ebola can be cured with intravenous fluids, control of symptoms and antibiotics to prevent secondary infections, 71 percent have still died, many of those without availability of intense medical support because of limited resources in west Africa. Since the disease is spread only by body fluids (like blood, saliva), isolation is paramount but often not performed in African communities.

So it becomes hopeful to hear that several people have survived with experimental treatments. Although there is no formal clinical trial program yet in place for these untested therapies, the media stories are optimistic about aid workers who have received intensive medical treatment and in addition have also received investigational therapies (drugs, vaccines, immune plasma) and have survived the Ebola infection. This includes minimally-tested drugs that have been shown in animals to cure Ebola, but human trials, if any, have not been performed.

These anti-Ebola drugs include TKM-Ebola from TekMira in Canada, used most recently to treat Dr. Rick Sacre in Nebraska. He also received immune plasma from a survivor of Ebola. The FDA has given permission to use this drug to treat individual patients suffering from the Ebola infection, leading to wider availability. But supplies are limited.

Another drug is Z Mapp, a monoclonal antibody against Ebola produced by Mapp Pharmaceuticals from tobacco plants. It has been used with Dr. Kent Brantley and Nancy Writebol, both of whom survived. However, it was unsuccessful in treating a priest named Miguel Pajares, who died in Spain. Another antiviral drug from BioCryst is in development.

Vaccines are being produced for clinical trials. There are at least six vaccines that will be tested in normal people to determine if spread of the infection can be prevented, but these vaccines will probably not be helpful in this current epidemic.

Immune plasma from Ebola survivors has been used, as in the case of Dr. Sacre. Although we know that such plasma contains anti-Ebola antibodies, it is not known how effective this treatment is, or how much plasma is needed to cure a patient. But the World Health Organization has approved the use of investigational treatments in patients currently suffering from Ebola as ethical, which will lead to wider use of these untested treatments.

So the question for you is, would you take one of these untested treatments that have shown good results in animals (not humans yet) if you contracted Ebola? And even though you will probably not get Ebola, you could more likely get a life-threatening illness, like cancer, and reach a time when standard drugs have not worked. At such a time, would you want to receive an investigational drug, even one that had not been widely tested yet in humans?

If you answered yes, that is correct. If you answered no, that is also correct. Everything depends on your own attitude and desire to accept risk in the face of serious, possibly fatal illness. It also depends on how well the physicians have explained your condition and the new drugs to you and to your family.

Here are my tips on getting experimental drugs for life threatening conditions.

• If you have a life-threatening condition, be certain to ask your physician about all possible treatments, standard and investigational, that might be available. Research on the Internet about each of these treatments so you know more information.

• Find out where the investigational treatments are available. The physician may know, but there are listings of clinical trials that are available to patients through the National Institutes of Health.

• If you are not successful in finding information from your physician, get a second opinion about clinical trials. For information on clinical trial evaluation, and on getting second opinions, see my book Surviving American Medicine.

• My advice, which I describe to my patients, is that if a curative treatment is available, use it first. If there is no curative treatment, consider a clinical trial. If the trial gives you only a 50 percent chance of getting a treatment that you want to receive (because of the randomization process), be cautious of participating and ask if there is a way to get the experimental treatment any other way (you can even contact the manufacturer of the drug directly).

• Beware of drugs that have not been reviewed at all by the FDA or a similar non-USA governmental agency (e.g., Canadian or British), since those drugs may be dangerous and side effects may not be known. All the drugs and vaccines I have listed above have been reviewed by such agencies, even though some may not yet have been approved for trials.

If a condition, even Ebola, threatens your life, be courageous, be informed, and be prepared to make a decision that could help you survive.

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