Artikel fra lupus.org
50 Years Without a New Lupus Drug
We Need to Share Stories with Congress and
Encourage Researchers to Keep Up Their Efforts
It's Time for People with Lupus to Make Their Voices Heard!
Thursday, November 20, 2008 will mark an unfortunate anniversary. On that date, it will be 50 years since the U.S. Food and Drug Administration (FDA) last approved a drug specifically to treat lupus.
A half century is a long time to be waiting for safer and more effective treatments for a disease that affects an estimated 1.5 million Americans and at least five million people worldwide.
We need to let Members of Congress know that they must provide more funds to conduct the basic research that pharmaceutical and biotechnology companies need to develop new treatments for lupus.
At the same time, we want to express our collective gratitude to the hundreds of researchers and industry executives who have been working tirelessly for many years to bring scientific discoveries from the bench to the bedside.
So what does 50 years without a new lupus drug mean to you?
No one is more qualified to speak out about the need for better treatments than individuals with lupus who have no option but to keep using the outdated drugs that were approved for lupus when Dwight Eisenhower was still president and can have side effects worse than the primary disease.
How can people with lupus help? Share their story!
We want people affected by lupus to send a two part email message to firstname.lastname@example.org, hopefully before November 20, but as soon as possible.
In the first part of the email, write a short message (about 150 words) that explains to Members of Congress what 50 years without a new lupus drug means to you. In the second part of the email, write a short note of appreciation that explains to researchers and industry executives how grateful you are for their efforts to develop new safe and effective treatments for lupus.
Please include your first and last name and your city and state in your email. If possible (but certainly not required), please also attach to your email a clear photo of yourself so we can personalize your message.
LFA will use your email message in several ways to help advance the science of lupus!
1. Deliver your message to Congress. During the LFA’s Annual Advocacy Day, lupus advocates will deliver your story, and the stories of others, to policymakers in Washington, DC. Be sure to include your name and your city and state in your message so we can deliver your story to your Representative.
2. Feature selected stories on the LFA website. While we are not able to promise that we can post every message and photo we receive, we will review each one and post as many as possible to our website and in our blog so the public also can learn about the impact that 50 years with no new drug has on people with lupus and their families.
3. Share your “Thank You” notes with Researchers and Industry Executives. Today there are hundreds of dedicated researchers and executives from pioneering biotechnology and pharmaceutical companies working hard to advance the science of lupus and conduct clinical studies of nearly 30 potential new treatments for lupus. We want these individuals to know how much you appreciate their continued focus on lupus.
We Need Your Help Now! Act Today!
Send your message and photo today (or by November 20) to email@example.com. Then, on Thursday, November 20, visit our website to read the messages and learn how the LFA is taking steps to address this urgent problem.
Ask Others To Get Involved!
Please share this request with others who also have been waiting as long as five decades for a new lupus treatment! Together, we can raise awareness of this issue and urge our elected leaders to provide increased funds for research to find ways to develop safer and more effective targeted therapies for lupus.