By Robert Cauttero,
former ALS caregiver
May 27, 2003

President Bush has signed a five-year plan authorizing $15 billion to prevent and treat AIDS abroad, especially in Africa and the Caribbean. The legislation hopes to care for 10 million HIV-infected people and AIDS orphans, prevent 7 million new infections, and provide drug therapy for 2 million.

This is a noble effort which should be applauded because it will ease or prevent the suffering of millions of people, including many children. However, AIDS remains a disease which can largely be prevented by taking simple precautions to protect against infection and by continuing to educate the public.

Americans who suffer with catastrophic diseases, such as ALS, Multiple Sclerosis, Parkinson's, and Cystic Fibrosis, just to name a few, are largely ignored when it comes to federal money for patient care, treatment, and research.

According to the National Institutes of Health, the NIH will spend an estimated $4 billion for AIDS related research in fiscal year 2003. In contrast, ALS only receives around $120 million from both the NIH and the federal government for research.

How can this be fair?

Billions and billions are spent elsewhere and people living with ALS get Uncle Sam's pocket change.

Is the suffering of ALS patients less deserving?

My intention in writing this commentary is not to play the game, "My Disease is More Terrible Than Yours." All human suffering is deserving of compassionate attention and AIDS research and treatment should continue to be properly funded. But it just makes me shutter to think of what we could do to help the patients and families whose lives have been devastated, emotionally, physically, and financially, by ALS if we just had a small portion of those billions of dollars, which the federal government seems to throw around so easily, except of course, when it comes to our cause.

And I don't want the funding for other diseases to be decreased so more money is available for ALS. That would be plain wrong. As I said, easing human suffering should not be a contest.

Will there ever be a cure or treatment for ALS?

Yes, I have no doubt that day will come. The only uncertainty is WHEN?

ALS, and other orphan diseases, will only be cured when enough people come together, raise their voices and fists in protest, and demand that their suffering is no less deserving of the attention, compassionate care, and the federal billions that others receive.

The federal government spends $1 billion of our tax dollars a day to keep our troops in Iraq, in the name of fighting global terrorism. Washington should also declare war on the 'biological terrorism' of disease and illness and do it with the same commitment and focus.

Call or write your representatives. Tell your family members and friends to do the same. Educate others about what it means to live with ALS. Remember, most people know little or nothing about ALS. People WILL care about ALS once they learn about it.

There WON'T be a CURE without YOU!

Please post your comments below.

(The opinion expressed in this commentary does not necessarily reflect the viewpoint of Ride for Life or any of its board members.)