Lucentis - Why I am so passionate about making sure Lucentis is available and covered under pharmacare in Manitoba

Lucenits is a drug used to treat acute macular degeneration and it has been found to be a remarkably effective treatment. Acute macular degeneration is a major, indeed I think, the major cause of blindness in seniors. Lucentis is so effective in some people, that people treated early who have lost enough sight that they can no longer drive have their sight return so that they can drive a car once again. It is remarkable. Lucentis is now covered under pharmacare in most provinces. It is not covered under pharmacare in Manitoba. It should be. See also

http://www.manitobaliberals.ca/2009/01/lucentis-avastin-and-treatment-of-age.html

I am really passionate about this because my father has lost his vision to acute macular degeneration. For my father, the vision loss occurred before Lucentis was available, and sadly at that time there was no effective treatment to save the sight in a person with acute macular degeneration of the type he developed. Over the ten years or more since my father lost his vision (he is legally blind - though with the aid of large magnifying glasses and similar aids he can read but it is cumbersome), it has made his life much more difficult than it would have been had he been able to see well. It would have made so much difference to him and to all of us who are close to him, if he could see well. We do what we can to read to him, and he listens to music and talking books but it is not the same as having full sight.

Nevertheless, my father is a very remarkable person. Even in cold weather, he walks for long distances outside every day to keep fit. He keeps up to date with what is happening and he really enjoys the company of family and friends. In the photo above, I am going for a walk with my father in Saskatoon over the Christmas holidays.

I have a great deal to thank my father for. Throughout my life he has been there for me. Once when I was young, I almost drowned in a swift river, and he jumped in and swam to save me. In the years since, he has been supportive in so many ways it would be impossible to count.

I have featured him on my blog on a numer of occasions including

a) his role in the Second World War - http://www.manitobaliberals.ca/2005_11_06_archive.html

and

b) his role in promoting breast feeding and in understanding and treating allergies

http://www.manitobaliberals.ca/2006_06_25_archive.html

and

http://www.manitobaliberals.ca/2006_09_24_archive.html

as well as on many family occasions. One day, I will all put on my blog more details of his role in the discovery of an effective treatment for phenylketonuria, a condition that if not treated results in serious and irreversible brain damage. Today thanks to my father and others who worked with him, many, many children the world over who are born with phenylketonuria are detected at birth and are treated and grow up developing normally and live normal lives, though they have to keep to a particular diet to stay well.

It is because of my father that I am so passionate about ensuring people in Manitoba who have acute macular degeneration have access to lucentis. We can prevent blindness in many people with this disease. We need to be doing it, without having Manitobans pay out thousands of dollars to do so. It should be part of our basic medicare support system so it is available to all Manitobans regardless of income.

I am still getting calls from people who are having great difficulty getting the lucentis they need. It is time for Manitoba to do what most other provinces have done, and cover lucentis under pharmacare.

THE PUSH FOR LUCENTIS COVERAGE SWINGS INTO HIGHER GEAR IN MANITOBA - IT IS TIME TO END MANITOBANS STATUS AS "SECOND CLASS CANADIANS".

I have received an email from Dean Cousens with the Coalition for Lucentis Equality in Manitoba. He raised the isse at the February 2nd meeting of the Manitoba Chamber of Commerce where Health Minister Theresa Oswald spoke. In brief, from Dean's notes, he asked the Minister the following:

GOOD MORNING, MADAM MINISTER.

I'M DEAN COUSENS AND MY GUEST IS SILVIA CHIARAMELLO. THESE NAMES MAY SOUND FAMILIR TO YOU AS WE'VE BOTH BEEN WRITING TO YOU FOR OVER ONE YEAR REGARDING THE ISSUE OF AGE-RELATED MACULAR DEGENERATION, WHICH AS YOU KNOW, IS THE LEADING CAUSE OF BLINDNESS IN CANADA FOR ADULTS OVER TEH AGE OF 50.

OTHER ORGANIZATIONS HAVE BEEN WRITING TO YOU FOR OVER TWO YEARS!

AT A COST OF $1,000 PER EACH INJECTION INTO HER EYES, MY FRIEND SILVIA HAS ALREDY SPENT $5,000 TO MAINTAIN HER EYESIGHT.

SINCE 2007, ALMOST 3 YEARS AGO, A DRUG TREATMENT (LUCENTIS) HAS BEEN AVAILABLE, AND IS CURRENTLY FREE TO OVER 90% OF CANADIANS IN 7 PROVINCES, BUT WHENEVER WE ASK YOUR DEPARTMENT WHENI T WILL BE AVAILABLE TO MANAITOBANS, YOU CLAIM YOU ARE "STILL NEGOTIATING" - EVEN AFTER IT HAS BEEN AVAILABLE ELSEWHERE FOR THREE YEARS!

CAN YOU PLEASE HELP ME UNDERSTAND JUST WHAT THE REAL ISSUE IS, AND WHAT IS SO UNIQUE ABOUT MANITOBA, THAT YOUR GOVERNMENT HAS BEEN UNABLE TO FINALIZE AN AGREEMENT WHICH 7 OTHER PROVINCES HAVE NEGOTIATED QUITE SSUCCESSFULLY? IT'S INEXCUSABLE THAT MANITOBANS ARE BEING TREATED AS "SECOND CLASS CANADIANS", AND MANY ARE GOING BLIND, AS THEY CANNOT AFFORD THE LUCENTIS TREATMENT.

THANK YOU.

Dean tell's me the Minister replied with her usual "We're working on it."

I say - "What is the matter Madam Minister, that it takes three years to get this important drug under pharmacare for Manitobans? How many more Manitobans will go blind before you act? Manitobans should have been covered some time ago. We should not have had to wait, wait and wait like this."