SECTION: CAPITOL HILL HEARING TESTIMONY

LENGTH: 766 words

COMMITTEE: HOUSE GOVERNMENT REFORM

HEADLINE: EXPERIMENTAL DRUGS FOR THE TERMINALLY ILL

TESTIMONY-BY: FRANK BURROUGHS

AFFILIATION: PRESIDENT ABIGAIL ALLIANCE FOR BETTER ACCESS TO DEVELOPMENTAL DRUGS

BODY: Testimony of Frank Burroughs for Hearing on Access to Experimental Drugs

June 20, 2001

I am Frank Burroughs. I am better known as the father of 21 year- old Abigail Kathleen Burroughs.

Since February of this year, when Abigail ran out of conventional treatment options in her battle against squamous cell carcinoma
that had invaded her neck and lungs, I and others began to try to get treatment for Abigail with promising experimental EGFR
targeted cancer drugs.

We tried to get Abigail into narrowly defined clinical trials, but she did not qualify for them. We worked very hard to acquire the
drugs on a compassionate basis and got nowhere.

The EGFR drugs we needed are Astra Zeneca's Iressa and Imclone Systems C225. Statistically and according to her oncologist
at Johns Hopkins, Dr. Maura L. Gillison, these drugs had a significant chance of saving Abigail's life.

My only child, dear, sweet, loving, talented, and compassionate Abigail died at 2:30 PM two Saturdays ago, June 9th.

The loss of my beautiful compassionate daughter has left a tremendous hole in my life and has left me very sad.

Her mother, Kathleen Dunn, who worked so hard and bravely, to care for Abigail, is also devastated. Her dear caring step dad,
Gene Krueger, also shares our anguish.

There was hope, but no compassionate use of Astra Zeneca's Iressa or Imclone System's C225 for Abigail.

Abigail was compassionate. During Abigail's senior year in high school, she was awarded the very prestigious Harry F. Byrd
Award for Outstanding Leadership and Community Service for the 8th Virginia congressional district.

Abigail was an Echols honor student at the University of Virginia.

Abigail cleaned toilets and changed beds at a men's homeless shelter. Abigail worked on fixing up houses and helped run a free
summer day camp in a poor neighborhood in Syracuse, New York.

Abigail started a major tutoring program for middle school children with learning problems. This is the short list.

Abigail was compassionate.

The world has lost a brilliant young woman who would have done great things.

I am here today, because the issue of wider compassionate use of hopeful experimental drugs needs to be given more attention.

We did not get a chance to try to save Abigail's life. However, compassionate Abigail wants us to keep this issue alive, although
we could not keep Abigail alive.

Part of my being here today is to learn more about this issue. In Abigail's absence, I and other people want to carry on this battle
we started in February of this year.

I know that money is an issue. Some pharmaceutical companies provide wide compassionate use of their hopeful experimental
cancer drugs.

Imclone Systems has no compassionate use program. Multi-billion dollar Astra Zeneca has a very small and very narrowly defined
expanded access program that young Abigail did not qualify for.

A very important role of the U.S. Government and Industry is to help people and to try to save lives.

We did not get a chance to try to save dear, sweet, talented, compassionate Abigail.

One idea I am working on I shared with Abigail on the Thursday before she died. Abigail really liked the idea.

That idea is to set up a foundation, or other vehicle, to raise money from private sources, from the giant pharmaceutical industry,
and the U.S. Government to provide money to pay for more production of hopeful experimental cancer drugs to be distributed
through compassionate use.

Data from compassionate use could be helpful in understanding a drug's effectiveness.

I am honored to be here today with Doug Baxter, young 16 year-old David Baxter's father. Another tragedy that 16 year- old David
Baxter of Sacramento California is facing, his family is facing, and others are facing is that special David cannot get into Imclone
System C225 clinical trials for his colorectal cancer, because he is under 18.

Also strict definitions of the trials have blocked David's access to a few trials that have not waived the age requirement.

Abigail was compassionate. Abigail is now in the arms of God.

Others, with the strength of Abigail's sweet beautiful memory, and I will keep this issue alive so others may have a chance to live.
Compassionate Abigail did not have that chance.

Thank you for inviting me here today.

Thank you Abigail for giving me the strength to make it here today.