Patient Power -
Medical Care in the 21st Century
In 2010, when someone receives bad news from their doctor, their first stop is often their home computer. This trend is a double edged sword according to many physicians. Their patients are both more knowledgeable about their diagnosis and treatment options, and more likely to run across erroneous information presented as fact. One thing is certain, the days of patients saying, "Whatever you think best, Doctor” are fading away as more people take responsibility for their health care and demand more of their physicians.
The Internet has certainly changed the isolation that many people felt in the past. Someone diagnosed with the rarest of conditions, can, within minutes on the Internet, connect with someone else with the same condition. And sometimes, knowing that you're not alone is medicine in itself.
That kind of reaching out and connecting helped Ann Cherry, 56, to find information and resources which led her to an alternative treatment for her Multiple Sclerosis (MS) three years ago.
Ann was diagnosed with MS in 1998 at the age of 44. Her physician started her on an interferon drug, one that had been available only since 1995. Current cost is about $2500/month. After 8 years of use, both she and her physician agreed that the interferon drug was not helping and she stopped using it. Her physician wanted to try a new, yet more expensive ($7600/month) drug with some scary potential side effects and Ann declined. At about that time, she heard about a drug that was the subject of much talk on an Internet MS discussion group. And that's when it got interesting.
A primer on MS: MS is a chronic, progressive disease that attacks the Central Nervous System (CNS) which includes the brain, spinal cord and optic nerves. In MS, the body's own defense (immune) system attacks the myelin or protective cover over the CNS nerves. When this cover is damaged, the nerve impulses traveling to and from the brain and spinal cord are distorted or blocked. There are several types of MS. The progress, severity and symptoms of MS are unpredictable and vary from one person to another. Most people are diagnosed between age 20-50, but MS is also seen in teens and young children as well as older adults. Women are more likely to have MS than men. There are 400,000 people in the US with MS, 2.1 Million world-wide.
With a disease as variable and generally slow developing as MS, research can seem slow, if not glacial. Drugs that may seem helpful in the short run, have to be evaluated over years, even decades, to compare their effects. Recent studies cast doubt on the effectiveness of the interferon drugs for treatment of MS over the long haul. A 2009 study by Boggild, et al, looked at the progression of disability of over 3000 British MS patients who had been given one of the interferon drugs compared to untreated patients. The analysis of that study showed that the progression in disability was worse in those treated (with traditional MS drugs, like interferon) than those untreated. As with most scientific studies, more analysis and additional studies are needed. But at the very least, it points out the conflicting information available to an MS patient.
After Ann rejected the expensive new drug she was offered, she began investigating the use of naltrexone. This is a drug which was approved in 1984 to treat heroin addiction. The drug blocks the opioid receptors in the brain and therefore the pleasurable effects of opioid narcotics like morphine, codeine and heroin. The approved dose of 50 mg created a 24 hour block of the opioid receptors. Doctors began using the drug "off label” or for other reasons. This is legal and common practice. Dr. Bernard Bihari, a Harvard-trained physician and researcher, found that naltrexone also blocked endorphin receptors in the brain. Endorphins help control the immune system. He found that low-dose naltrexone, meaning about 5 mg, as opposed to the 50 mg dose, caused the body to think that there was a shortage of endorphins and triggered a release of more endorphins, which helped the immune system fight off infection, specifically HIV. He later found that low-dose naltrexone (LDN) was effective in reducing relapses of MS, a common component of the disease.
LDN is now prescribed for a variety of diseases, including HIV/AIDS, Parkinson's, Alzheimer's, some cancers, autism, emphysema, MS and other auto-immune diseases. These are all off-label uses like in MS and require further study.
Now, if this were a new drug, there would be a stampede to the FDA to license it and test it. But this was not a new drug, it was an old drug, one that was no longer patented, meaning that there was no big money to be made by testing this drug in MS or other diseases. And so there has been no rush by pharmaceutical companies to champion this potentially life-changing drug. It might have something to do with the cost of the drug. Recall that the costs of the MS drugs offered to Ann previously were $2500-7600/month? Well, lowly LDN costs $20/month. That's not a co-pay, that's total cost.
So, Ann had found a potentially helpful drug, all she had to do was get a prescription and try the drug out for herself. She went to her neurologist and asked and was turned down flat. Actually, the neurologist "fired” her as a patient. Surprised, she turned to her online group again, and they came through for her. She was given the name of a physician in Pennsylvania. After a consultation, she was given a prescription for LDN in June, 2007. Filling it was another challenge, but the online group had the answer again and she was directed to a special pharmacy, a compounding pharmacy on the east coast of Florida. The pharmacist was also able to help her find a local physician willing to consider LDN use for MS and who sees Ann every 6 months now.
Within a week of beginning the LDN, Ann noticed results. Her memory improved, her speech improved, her balance improved. She could handle the heat again. For someone who loves our corner of the world, MS brought challenges with handling hot weather. While she still prefers the A/C, she is able to be out in the heat now without collapsing, which happened before she started the LDN.
Ann is quite happy with the effects of taking the LDN for the last 3 years. It has dramatically changed her life. She speaks of not having a single cold or other infection in the last 3 years while taking LDN. She only wishes she had known about it and started using it sooner. She wonders if she might have stopped the progression of her symptoms a bit sooner, allowing her to still walk easily rather than use her scooter to get around. She also is enthusiastic about getting the word out about LDN. She says she wants to prevent anyone from suffering the effects of MS if it can be helped. She also urges anyone with other health issues to think for themselves and consider LDN as an immune system booster.
There is outrage in her voice when she talks about drug companies and the National MS Society, who she claims spent years squashing any word on the benefits of LDN, telling local group leaders to not discuss LDN at meetings. But she's also happy to see the tide turning for LDN.
The National MS Society website currently has a research report dated March, 2010 in which they describe a clinical trial using LDN that "found benefit for MS patients.” Numerous other studies can be found by searching PubMed.gov. Most of these studies end with the very promising words: "Further studies of LDN in MS are warranted.” The tide has turned, in no small part due to people like Ann Cherry who were willing to look outside the box to find answers and who reached out to others using the Internet.