Jan Stephens, IC'er, speaks out at LA Health Policy Meeting

[icnmgrjill]

It's very important that we recognize those IC patients who have the courage, strength and, ultimately, a strong sense of humility in sharing their experience with interstitial cystitis. IC patient Jan Stephens (and ICN user) did that recently at health care policy event that not only introduced IC to a large audience but shared the economic burden that she has faced as a long term IC patient. It's brilliantly done... and here's an article on it!

http://www.the-tidings.com/2007/100507/policy.htm

Thank you Jan! Bravo!

Jill :)

[Trishann]

This is so sad to know that people are having a hard time in getting the help they need so much.

Years ago my cousin had heart problems. She got a new job but they refused her of health insurance because of the pre-existing health issue. She could not get the proper help and she did passed away.

It is just so sad that we live in America and yet some can't get help.

Sending hugs, Trish

[ICNDonna]

Good job Jan!

Donna

[justice4j]

Jill,

Thank you for recognizing my efforts. I somehow missed this post until tonight! I'm sorry for not responding sooner. I value ICN and all forum members. I am deeply appreciative for all of you who have supported me.

It is my great pleasure to speak up for all IC patients as well as any others who are experiencing difficulty affording/accessing their healthcare. I believe that affordable, quality healthcare is a RIGHT, not a privalege. Insurance, pharmaceutical, and other healthcare corporations have no right to put profits over people's health, IMHO.


I firmly believe that opportunities were given to me to speak and that I have an ethical, moral obligation to do so. It's not something I had ever done until August 2007. My father is a retired minister, so I guess watching him speak for 2 hours every Sunday I unconsciously picked up some public speaking tips. LOL! I'm spiritual, but I am not a church goer. I had enough as a child.


My first speaking engagement was for It's Our Healthcare, a healthcare reform coalition of which the LA Archdioce is part of. IOH referred the LA Archdioce to me, and that's how it came about.

If I didn't have the opportunities to speak out for healthcare reform, recognition of IC as a disease with sometimes staggering medical costs, and publicize the cost of Elmiron, I would feel helpless and depressed. Taking action make me feel that I can at least contribute that. The experience of speaking publically about IC, Elmiron, and healthcare reform has been nothing short of gratifying.

I am extremely grateful for the life changing opportunities that have come my way.

Love, Peace, Joy,
Jan