no one can serve two masters / MS meds

from today’s Washington Post:

Was my doctor loyal to me, or to the drug companies?

“…I knew that I had felt pressured by him to take medications. When I found that he had been paid six times my yearly salary to work for the manufacturers of those same drugs, my loss of faith was complete … having MS is difficult enough. The last thing I needed was to worry about whether my neurologist was acting in my best interest…”

Caregivingly Yours, Patrick Leer 

videos: www.youtube.com/daddyleer

politics of Multiple Sclerosis

"The health and safety of Canadians is of the highest importance, and we need reliable, national information on Multiple Sclerosis to help those diagnosed with MS and their health-care providers" … "It is political because there have been public demands for action here and the government is responding." Ottawa announces MS monitoring system to track disease patterns, treatments 

South of the border here in the USA, “The prices of multiple sclerosis medicines have risen as much as 39 percent since last year … The prices may rise further ... analysts said in a Feb. 7 note to clients ... sees room for additional increases” U.S. Price Increases for MS Treatments 

Almost as if an illustration for a modern version of “The Emperor’s New Clothes” Democrats light a birthday candle, “This is a very special month for us because one year ago we passed the historic Affordable Health Care Act, which has made a difference in the lives of the American people.” House Minority Leader Nancy Pelosi (D-Calif.)

One difference is true, a year ago the caption would have read House ‘majority’ leader. In the real world where cost of MS medications have skyrocketed, elections in between have demonstrated the confusion and dispute that continues.  At least for ‘we the people’, Big Pharma has not missed a beat.

Locally a corner is accused of removing prescription medications from death scenes. While obviously innocent until proven guilty, the unaffordability of prescription medications in the US is a blank page just waiting to be written on.

“reliable, national information on Multiple Sclerosis” - Go Canada!

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com 

videos: www.youtube.com/daddyleer 

two amazing people

"Angels are among us....Today I went to fill a prescription for my son, a daily use asthma controller …

At the pharmacy, there was some sort of problem with his Medicaid not going through to cover the cost of the inhaler. When the pharmacist said "you can bill it to your credit or debit card", I laughed and reminded her that I am out of work and have very little money.

I asked how much it cost ($132) and said I would try to borrow the money from a relative and return before they closed, that I couldn’t afford to wait till tomorrow to resolve the issue because my son is currently fighting a bad chest cold and in desperate need of his medicine.

I left the store and began to scramble to find a way to borrow the needed money. Within 5 minutes, my wife called me to say that the pharmacy called and the medicine was paid for and could be picked up.

The pharmacist told me that an anonymous person had covered the cost of the inhaler after overhearing my plight. That's right; a complete stranger paid $132 for my son's inhaler. The pharmacist pointed to a couple walking out of the store and said that the couple heard my conversation and wanted to help, and also to remain anonymous. I left the store heading home with my son's medicine, and with tears in my eyes and hope in my heart.

I cannot begin to explain how grateful I am to that couple for their generosity and kind heart. … I wish I could tell the world of these two amazing people. I know that I am forever in their debt and will, in every way that I possibly can, pay forward what they have done for my family, for my child.

telling this story is the first act of repayment..."

Dear ‘strangers’: Born prematurely and with congenital myotonic muscular dystrophy my little cousin in this story also endured chemotherapy and surgery to defeat liver cancer while still only an infant. Bless you for your kindness to this now child of courage and his caregiver parents.

Caregivingly Yours, Patrick Leer 

web site: caregivinglyyours.com
videos: www.youtube.com/daddyleer 

What price hope? Multiple Sclerosis medications

Can anyone really put a price on hope? Pharmaceuticals sure seem to have a knack at it, enough to create a $6 billion Multiple Sclerosis medications market.

‘Our story’ dates back to the dawn of the original Betaseron trials. Betaseron rejected Patti as too progressed; she had a minor foot drop. Following FDA approval Patti’s prescription plan rejected her for Betaseron … yes you guessed it, because Betaseron, itself, had previously rejected her.

In another couple years Patti was in a wheelchair. What if … ?

Well, ONLY Betaseron has enough history to be studied.

The American Academy of Neurology has heard an earful. In 2005, preliminary data from a 16 yr study showed that about 50 percent of those in the original Betaseron group reported the ability to walk without assistance compared to 41 percent of those from the placebo group.

This Spring, Bayer (makers of Betaseron) claimed “early initiation and sustained exposure to Betaseron were strongly associated with a reduced risk of a negative outcome (EDSS score ≥ 6.0, wheelchair use or conversion to SPMS) after 16 years”.

OK, now I am no rocket scientist but the difference between Betaseron and placebo was basically a 9% better chance of walking without assistance, or in Bayer-speak a “reduced risk of a negative outcome”.

What then is the price of a 9% better chance?

Back in the beginning with NO competition Betaseron ‘out of pocket’ was around $1,000 / month = $12,000 year. Today there are six Multiple Sclerosis medications. Curious how much competition has driven down that original price?

AVONEX $2,242/mo = $26,904/yr
BETASERON $2,113/mo = $25,356/yr
COPAXONE $2,376/mo = $28,512/yr
NOVANTRONE $1,389/mo = $16,674/yr
REBIF $2,327/mo =$27,924/yr
TYSABRI $ 2,612/mo = $31,344/yr

Something is just not right with this picture.

Insurance co-pays and/or medical assistance may help some to afford a better chance; however pharmaceuticals are still getting their money one way or another from a US health care system that is collapsing around us all.

Merchants of hope? … or pirates of hope?

Caregivingly Yours, Patrick Leer
web site: http://caregivinglyyours.com/
videos: http://www.youtube.com/daddyleer
musings: Patrick Ponders ...

P.S. Patti tried Avonex at the turn of the Millennium. Avonex then cost $1,250/mo. We paid $500/yr co-pay. Balance of $14,500/yr absorbed by her long term disability company health insurance plan. No positive results, discontinued after two years.

give us this day ...

A birthday present and an ideal caregiver's home companion!

Caregivingly Yours, Patrick Leer

web site: http://caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

musings: Patrick Ponders ...

safe medication use

Politicians endlessly prowl across Pennsylvania once described by James Carville as "Philadelphia at one end of the state, Pittsburgh at the other end, and Alabama in the middle.”

Penn State football and Phillies baseball play on the national stage.

Fortunately for ALL of us caregivers or consumers ... in Horsham, PA the Institute for Safe Medication Practices, the nation’s only nonprofit organization devoted entirely to medication error prevention and safe medication use, is hard at work. While not exactly grabbing the headlines they should be paid attention.

"A record number of deaths and serious injuries associated with drug therapy were reported to the U.S. Food and Drug Administration (FDA) in the first quarter of 2008."

"The total was 38% higher than the average for the previous four quarters, and the highest for any quarter."

"While prescription drugs bring great benefits to millions of patients and most are used safely, these data show the need for additional progress to better manage the risks to patients."

You can read their complete study at
Quarter Watch: 2008 Quarter 1, October 23, 2008

Caregivingly Yours, Patrick Leer

website: http://www.caregivinglyyours.com/

videos: http://www.youtube.com/daddyleer

musings: http://patrickleer.blogspot.com/