It is rare, in this time of information overload and horrifying headlines, that I can be actually shocked by a news piece. However, I was completely floored (and saddened) by the information contained in a research article with the mundane title of “Analysis of NAMCS data for multiple sclerosis, 1998-2004.”
Bottom Line: Most of us are not taking disease-modifying drugs. More specifically, 62% of people with MS visiting neurologists and 92% visiting general practitioners or internists were NOT taking these drugs.
I guess I just assumed that most people were taking one of the therapies (which includes Avonex, Betaseron, Rebif, Copaxone, Novantrone and Tysabri), making people with MS into a big club of people that were glad that we had the drugs, while still complaining about side effects and hoping for something a little better. I pictured virtual “moments of silence” when we thought about those for those for whom the drugs came too late or have been ineffective in slowing disease progression. Clearly, I was wrong in my assumptions.
Description of Study
Without going into gory epidemiological detail, the data came from the National Ambulatory Medical Care Survey (NAMCS), which is a survey conducted annually among a sample of physicians in the US. The results are analyzed in such a way that they could be extrapolated and applied to give national estimates.Other Results
The study looked at how many and what kind of MS patients were on treatment, as well as the type of doctors that they visited. This is what they found:- 50.7% of patients were seen by neurologists, 20.7% by family practitioners, 11.0% by internists and 17.6% by “other” kinds of doctors
- 89.5% of patients were insured in some way (52% had private insurance, 27% received Medicare and 10.5% received Medicaid) and it was shown that people on Medicaid were least likely to be on treatment
- Women were almost twice as likely as men to be on treatment
- Year of study did not matter in terms of likelihood of being on treatment (meaning that doctors were just as likely to prescribe - or not prescribe - these meds in 1999 as they were in 2003)
- People ages 20-30 were more than twice as likely to be on treatment as those ages 40-59
Study Limitations
Because the data came from a much larger survey about the utilization of outpatient care in the US, there were limitations to the study, including:- Lack of information about types of MS or severity of disability of the patients
- No formal investigation as to the reason for this low number of patients on therapy (see Why Isn’t Everyone With MS on Therapy?)
What Does This Mean for Me?
If you are one of the people with MS who is not on a disease-modifying therapy, it is important that you discuss this with your doctor to find out if one of these drugs is right for you. There is a very good chance that you would benefit from treatment. Take this article along to show your doctor and seek a second opinion from a neurologist if you aren’t satisfied with the discussion.Source:
Jagannadha R Avasarala, Cormac A O'Donovan, Steve E Roach, Fabian Camacho and Steven R Feldman. Analysis of NAMCS data for multiple sclerosis, 1998-2004. BMC Medicine 2007, 5:6
