Suzanne Pattee and her parents at the Heroes of Hope Award ceremony

Suzanne Pattee is Vice President of Regulatory and Patient Affairs at the Cystic Fibrosis Foundation. She was recently awarded the 
"Heroes of Hope Award" for her work helping
to better the lives of patients with CF.

I have had CF since I was born… 43 years ago. I didn’t talk much about it as a kid. I was afraid to tell my best friends, since I thought they might treat me differently. I didn’t want anyone at school to know. But, my mother did. She made sure the school knew, the teachers knew. She made sure that I was not assigned to classes in the trailers outside the high school, or pushed too hard in PE class. As if PE class was where I’d be pushed. Heck, I had 4 brothers at home to tangle with!

Growing up, CF was just something I had. It mostly consisted of taking enzymes whenever I ate, sleeping in a mist tent, and doing chest PT, (my brother told me that they called them “tappies” when I was a baby). And getting to eat all the candy bars I wanted! There had to be some perks! Mom would take me to the doctor’s regularly, and we always made sure to plan something fun afterwards… like a trip to the museum. And I wanted to play a musical instrument, and my parents insisted it be a wind instrument – to give my lungs a work out! I enjoyed playing the flute and oboe for many years.

At age 6, I was a poster child in Norfolk, VA. I knew people were marveling that I was alive and healthy… I talked to legislators, rode on a float in a parade, and appeared with my dad on TV – “The Millie Show.” When I left the studio after the taping, a woman at the door smiled at me and told me I did a really good job on TV. I wanted to argue with her and say that I just stood there and didn’t do or say anything. What a strange thought for a 6 year old!

I’ve spent most of my life since college talking about CF. Talking about it to others with CF, to parents with young children who want to know “What’s your secret?,” to newspapers and to Congress. A good high school friend now has a young daughter with CF – who would have ever thought that would happen? I’ve worked for the CF Foundation for most of my career as a professional patient advocate and a lawyer. For someone who had a 50 percent chance to live long enough to graduate from kindergarten, I stunned them all when I finished law school. My parents threw me a nice party for graduation and my 30^th birthday!

I started my professional CF career at 21 years of age when I joined the CF Foundation as a secretary -- yes, we could use that word back then! Despite a bachelor’s of science degree in biology, I had to take a typing test for the job. But, I knew it wasn’t just a job – it was a place where I could have a future. Where I could use my life with CF to make a positive difference in the lives of others with the disease. I was still alive and well – that must mean I needed to give something back.

Somehow, I grew into the role at the CF Foundation. I was promoted to consumer affairs coordinator to represent and respond to the needs of people with CF. Then, I got to spread my wings by learning and doing public policy activities to advocate for more money and attention to CF research with Congress. It was fun and interesting so I went to law school – at night - so I could work part time at the CF Foundation, and keep my health insurance. During that time, I also went to the Supreme Court to hear a case about changing the way children are determined to be disabled by Social Security. I got to visit with the President and the Vice President… of the United States… to tell them I had CF. Vice President Dan Quayle had a “Council on Competitiveness” and he was looking at ways to speed up FDA approval of new drugs – and I was all for that! I even got to tell President Bush (W’s father) that I was in a clinical trial for a drug, and that I hoped the new regulations would help get this drug out to patients faster. It did – but probably not because I asked!

It was great fun to visit with the President and Vice President in the West Wing and the “OEOB” (Old Executive Office Building). My parents and I took a special tour of the buildings, along with my ninety year old grandmother where she pretended to be giving a press conference in the White House press room! She was so much fun. And, definitely doted on me… her little granddaughter who had once been very sick.

After I finished law school, I took lessons from my trip to the White House to promote drug development seriously and went to work for the biotechnology industry, where I could once more share my story as a patient. And now one who was benefiting from the new biotech drug I was taking when I visited the White House, Pulmozyme.

I’m back working at the CF Foundation after 6 years with the biotech industry. I’ve been asked to share my opinion and experiences as a patient with biotech companies, researchers, health care professionals, parents and many federal officials. I have been lucky to serve as a member of a federal advisory committee to share my views on FDA regulations with the US Department of Health and Human Services. I’m a member of a forum at the Institute of Medicine to talk about ways to improve the drug development process for patients. And, I talk about living with CF, participating in clinical trials, taking medications all day long, visiting the hospital for tune-ups… as I try to encourage the federal government to make things better for people who need drugs to live… not just to feel better.

I try to advise people with CF about paying for their medications, and work with lobbyists to save state programs from budget cuts. And, I try to make sure the system to protect patients in clinical trials is really good – and still fast. Because I don’t want to wait another decade and a half for a cure – I’ve waited long enough!

Although I’ve worked for the CF Foundation for nearly 15 years, I recently found that I could no longer “pretend” that CF is a “hat” I put on when I go to work in the morning. I have to face it much more each and every day. And, night. And, at every meal.

While enzymes at every meal were never a big deal – Ok so I could wow my friends by taking all 10 pills at once! - the insulin is much different. For 5 years, I did the insulin shot routine. When I was first diagnosed with CF-related diabetes at age 33, I dreaded coming home from work, because it meant… another meal and a shot. But, I got over that hurdle, and got used to the shots. When I changed to an insulin pump, everything seemed almost right again. I had been hesitant to wear the pump. But, within the first week of no shots and feeling better physically, the hesitation of wearing it disappeared and I welcomed it like a bosom buddy – which it is!

Sometimes I wish I was in the shoe business. My grandfather once owned a shoe factory. But, no, I was drafted onto “Team CF” at a very young age. And, I have been one of the lucky ones who has been healthy enough – and am now well-known enough among the federal government regulators – to try to make a difference and to give something back to try to help all of us reluctant members of this team. A team that will one day declare victory against this ugly disease!