Shire Pharmaceuticals Responsibility (Midodrine)

[firewatcher]

http://www.shire.com/shireplc/en/CorporateResponsibility

Sorry, I can't figure out how to post a link with this new forum.

This is Shire Pharmaceutical's Corporate Responsibility statement. On page 4 of 32 it mentions their stance on "Orphan Drugs: Improving the health of every patient" and how they are an industry leader in innovation of availability for drugs treating rare disorders. I think we qualify.

The rest is all warm and fuzzy about all the good they are doing within communities, etc...

My reason for posting this is that by targeting their own Corporate Responsibility Policy in our letters and emails to Shire, it might create a big win/win for all of us: raising awareness of our "rare" condition and possibly getting better treatments AND giving them good press! Just because the FDA is reversing itself doesn't mean that it would be profitable for Shire to continue to make Midodrine, unless it gives them a PR boost.

Just a thought.

[Noreen]

Don't forget their motto-

To be as brave as the people we help.

The icon for links is next to the smiley face. The new forum doesn't put links in blue, however, it just underlines them.

[Sophia3]

i'm also clueless with this new forum..but I'm at the age I detest changes/upgrades as it always makes a site more convoluted to this old broad!

Thanks for th article

[MightyMouse]

That's okay Sophia, I'm clueless too. The interface for me to do my admin stuff is completely different... totally working on my learning curve.

[Sophia3]

Good Luck Nina! with such a HUGE site & membership, I can't imagine all the stuff you are putting up with behind the scenes! It's all I can do to keep up with my stuff...blogs, Twitter, etc

Glad Midodrine is still here for those that need it !!

[MightyMouse]

I finally figured out how to approve new waiting members Sophia.

I can't tell you all how proud I am that our rag tag crew (small as it is) locked up the FDA website because of the fuss we made over midodrine! Just goes to show that fighting against the government can actually go the way you need it to when you join forces. Couldn't be prouder of our members than I am right now.

Nina

[firewatcher]

If they are going to make such a big deal about their concentration on rare diseases, they need to be held to what they say!

Here is the letter I emailed to CR@Shire.com

Mr. Angus Russell, Chief Executive Officer

Ms. Tatjana May, Chair of the CR Committee

Shire Pharmaceuticals

725 Chesterbrook Blvd.

Wayne, PA 19087-5637

USA

Mr. Russell and Ms. May,

Shire Pharmaceuticals has made it a part of its Corporate Responsibility agenda to be at the forefront of awareness of rare diseases and the specialty drugs needed to treat them. As a patient with a rare disease, I heartily applaud your efforts. I know, firsthand, the ?particular challenges facing people with rare diseases.? This kind of forward and compassionate thinking is what is needed to provide the necessary research and development of new therapies to treat many of these poorly understood conditions.

However, Shire?s recent decision to pull Proamatine from the market, while may be good business, is poor practice of your stated goals. As Mr. Russell said in a recent interview, Shire is ?not about sales and marketing? like the rest of Big Pharma. This drug is the only drug that treats hypotension and is vital to the daily functioning of many people. Though, we may be a small part of your profits, Proamatine is a large part of our treatment regimen.

Please continue to advocate for the treatment of rare diseases. Please continue to practice what you put in your CR Report and support innovation to address unmet needs; continue to manufacture Proamatine. Please live up to your motto: ?to be as brave as the people we help.? I have no choice but to be brave; I live with this condition every day. You have the luxury of choosing to be brave.

Thank you,

[Noreen]

If they are going to make such a big deal about their concentration on rare diseases, they need to be held to what they say!

Here is the letter I emailed to CR@Shire.com

Mr. Angus Russell, Chief Executive Officer

Ms. Tatjana May, Chair of the CR Committee

Shire Pharmaceuticals

725 Chesterbrook Blvd.

Wayne, PA 19087-5637

USA

Mr. Russell and Ms. May,

Shire Pharmaceuticals has made it a part of its Corporate Responsibility agenda to be at the forefront of awareness of rare diseases and the specialty drugs needed to treat them. As a patient with a rare disease, I heartily applaud your efforts. I know, firsthand, the ?particular challenges facing people with rare diseases.? This kind of forward and compassionate thinking is what is needed to provide the necessary research and development of new therapies to treat many of these poorly understood conditions.

However, Shire?s recent decision to pull Proamatine from the market, while may be good business, is poor practice of your stated goals. As Mr. Russell said in a recent interview, Shire is ?not about sales and marketing? like the rest of Big Pharma. This drug is the only drug that treats hypotension and is vital to the daily functioning of many people. Though, we may be a small part of your profits, Proamatine is a large part of our treatment regimen.

Please continue to advocate for the treatment of rare diseases. Please continue to practice what you put in your CR Report and support innovation to address unmet needs; continue to manufacture Proamatine. Please live up to your motto: ?to be as brave as the people we help.? I have no choice but to be brave; I live with this condition every day. You have the luxury of choosing to be brave.

Thank you,

Excellent Letter!

I generally agree with the 'you catch more flies with honey than with vinegar' approach. I couldn't find an e-mail address on Saturday so appreciate your post.

noreen