Tysabri infusion cost $2317

[batpere]

This is now perhaps not important, but my one Tysabri infusion was finally paid by the insurance company (Blue Cross). The infusion center billed $2319.51 for the whole thing (2259.61 + 3.30 + 6.60 + 50.00) and the insurance company paid $2317.81 (2259.61 + 3.00 + 5.20 + 50.00). Met my yearly out-of-pocket max with just one dose.

[HarryZ]

Batpere,

Your $ 2317 cost for the Tysabri infusion appears to be a real bargain compared to some of the prices quoted over on the Brain Talk MS Forum. One person quoted her infusion at $ 4932 while others gave anywhere from $ 3500 to $ 5000!!!

So much for Biogen's press releases that originally stated the wholesale cost of Tysabri would be $1800. I guess they forgot to give the "real" cost of what the final bill would be to the patient or insurance company!!!

Harry

[mrsmomnurse]

I have just received a bill from Kaiser...charges = 13776.70, Insurance paid = 11021.36, My out of pocket = 2755.34. This is for one month!!! What is going on????

[vesta]

I think it outrageous that your Kaiser? Doctor prescribed this drug without warning you about the cost. Apparently patients themselves have to do the cost/benefit analyses.
Consider the following:

QUOTE/
On March 21, 2013 it was announced that Professor George C. Ebers, MD, of University of Oxford in London, had been chosen to receive the National MS Society/American Academy of Neurology’s 2013 John Dystel Prize for Multiple Sclerosis. The following quotes come from http://www.nationalmssociety.org site.

"His studies of twins have shown that susceptibility is partly genetic and partly environmental, indicating that MS is a complex genetic disease. These findings contribute to efforts to end MS through prevention. (Proceedings of the National Academy of Sciences U S A 2003;100:12877) This showed linkage to the Human leukocyte antigen (HLA) complex (genes related to the immune system) on chromosome 6. (Lancet 1982;2:88)…
Research is increasingly pointing to reduced levels of vitamin D in the blood as one factor that can increase the risk of developing MS. (Annals of Neurology 2011;70:881)
Delineating the natural history of MS: Dr. Ebers has performed detailed studies tracking over time the “natural history” of MS in London, Ontario, Canada, following more than 1,000 individuals since 1972. Natural history studies provide important knowledge, such as the average number of MS relapses a person may be expected to experience. This helps to appropriately design clinical trials and interpret their results. These studies have been published in a series of important papers on topics such as the predictive value of the early course of MS (Brain 1989;112:1419), and the features of primary progressive MS. (Brain 1999;122:625)…

Epidemiology of MS: Dr. Ebers’ studies have forged new paths our understanding of who gets MS, which is the goal of epidemiology. In a study of over 40,000 people from Canada, Sweden, Norway and the United Kingdom, Dr. Ebers showed that the relative risk of developing MS is higher if you are born in May (like me) and lower if you are born in November. The finding of a birth pattern suggests the possibility that the origins of the disease date to very early in life. (British Medical Journal 2005;330:120)" (My comment. The Sun related Vitamin D deficiency persists throughout growth. For example, people who moved to Sweden from Iran at an average age of 17 developed MS at the higher Scandinavian rate. (Ahlgren et al., 2010).

Dr. Ebers also has contributed to the study of gender differences in MS. Among other contributions, he documented in 2006 a significant increase in the number of women diagnosed with MS more than men, noting that the female to male ratio in the incidence of MS had increased progressively over the previous 50 years. (Lancet Neurology 2006;5:932) (My comment.. The FDA approved Birth Control Pills in 1960. I suspect use of hormonal therapy has triggered the striking increase in female susceptibility to MS, the original male/female ratio being 1:1.)

A series of studies on the relatives of people with MS including spouses, half-siblings, adoptees, and step-siblings suggested the idea that increases in the risk for developing MS come less from the familial environment than from factors operating at a general population level, such as climate and/or diet. These studies led to examination of role of Vitamin D in MS risk and the potential of vitamin D supplementation for MS patients and their families. (Lancet Neurology 2008;7:268)"

END OF QUOTE

The Neurology Community was less pleased with Dr. Ebers when on 17 October 2013 he gave a lecture titled “Critical Review of outcomes used in MS clinical trials” which was posted on You Tube November 4, 2013 by the European Medicines Agency. (Thus far there have been only 803 views.)

Dr. Ebers basically said that current MS medications do NOT prevent descent into Progressive MS disability. See my blog (MS Drug/MRI Fallacy January 5, 2014) DMD’s treat the inflammation of the early RRMS. Once the Progressive stage sets in, they don’t work and decline sets in. Apparently the brain atrophies as do the veins draining the brain. It has been demonstrated that blood transit time in MS patients is one half that of normals. The question is one of perfusion i.e. blood flow, volume and mean transit time. ALL brain fluids contribute to adequate blood flow.

Dr. Ebers has engaged in debates denouncing (politely) the failure of Neurologists to face facts about DMD efficacy, arguing that the CCSVI controversy had revealed to what extent MS patients don’t trust their Doctors. If one obediently follows standard therapy only to finish in a wheelchair, by which time the CCSVI option and/or the “nourish the grey matter” option are less viable, one will have made a mistake. I believe current research delays owing to ideology and vested interests border on criminal.


Joan Beal (cheerleader on Thisisms.com), who oversees treatment for her husband Jeff, has combined the various options by 1) arranging the first Stanford CCSVI MS angioplasty (in his case the Jugulars were opened with stents) 2) using the MS drug Copaxone to prevent relapses and 3) "prescribing" optimal nutrition to nourish the brain's grey matter as well as the veins' epithelium.The Neurology community is still busy denying the viability of the CCSVI option, clinging to the observation that the benefits of Venoplasty disappear over time. So why not find out why and how to fix it?

I do not have peersonal experience with the drugs but from anecdotes Copaxone had positive reviews and I see that Joan Beal favours it for her husband. Also, I believe a generic is now available which should lower the cost.

MY FIVE STEPS TO MULTIPLE SCLEROSIS HEALTH

1. DETOXIFY
“Dr. Hyman explains his 10 day detox diet.
want2bike (From Thisisms.com)
I had the advice/assistance of a kinesiologist/nutritionist and won’t myself suggest a detox protocol. Dr. Hyman maintains that a simple diet change over 10 days will do the trick (or at least be a beginning) which is something anyone can try. So why not?
See also Detoxification and Supplements

2. OPTIMAL NUTRITION AND SUPPLEMENTS - Paleo-Macrobiotic Diet

3. ENHANCE BLOOD/CEREBROSPINAL FLUID CIRCULATION - CCSVI - See Acupuncture (which includes Tens Self Acupressure)
Simple blood/cerebrospinal fluid circulation thérapies such massage, acupuncture, neuro-muscular electrical stimulation, osteopathy, or swimming may suffice. I do daily Tens self acupressure treatments to stay afloat and try to get an acupuncture or osteopathic treatment once a month. A serious venous blockage may require ANGIOPLASTY. Prior to taking that decision, one might consult a specialist in skeletal disorders (e.g. Chiropractors or Osteopaths) to be certain a bone, muscle, tendon etc is not obstructing the vein.

4. SUNLIGHT OR UV RAYS on the skin at least 15 minutes daily to release Nitric Oxide essential to vascular health and blood circulation.

5. EXERCISE BUILD UP PROGRESSIVELY (Consulting a Physical Therapist can help)

See as well - Five CCSVI MS Types (Congenital, Developmental, Aging, Skeletal, or Toxic M.S.)

from MS Cure Enigmas.net