Ben Haines with his wife, Janice, and their daughter, Lyuda
Five questions with Ben Haines, LEO Patient Advocate
1. What is a Patient Advocate?
A Patient Advocate is there to represent the best interests of the patients. It is not only about durable remissions and long term survival of lymphoma but also about the patient’s quality of life.
2. How does a Patient Advocate help in lymphoma research?
Patient Advocates help by listening and answering questions that the doctors or others may have about a specific patient population or situation. For example, we help by giving input on better treatments or on what data to capture to make sure that the patient is put first without compromise. Always striving forward, to make a lymphoma diagnosis less threatening.
3. Why did you become a Patient Advocate? What’s your “Lymphoma Story”?
I just hit the 20 year mark of my Patient Advocacy. It started for me on March 25, 1997. My wife and I were then 31 years old when she was diagnosed with ‘incurable’ Stage IV B lymphoma. I knew then what I had to do: educate myself, help us, then help others. In my profession, I have spent 30 years in Corporate America turning data into information so my work in LEO is professional as well as personal.
4. What is the most rewarding thing about being a Patient Advocate?
It is an honor to be a Patient Advocate for LEO. The most rewarding part for me has been to be able to be behind the scenes with some of the best minds in lymphoma in the world and a team that works together. I have never seen the amount of cooperation in Corporate America as I have with this lymphoma team. The are efficient, passionate, and focused.
In the early days of my advocacy, I was angry, confused, and frustrated. After years of advocacy, I am opposite. Yes, still angry and frustrated at times but enlightened. and there’s a big difference. I have learned a great deal from these Hematological specialists, Epidemiologists and their teams. The best are not threatened by second opinions or the challenging of their results.
Being LEO’s Patient Advocate is the pinnacle for me. My wife is alive thanks to the lymphoma specialists, which includes entire teams, and my greatest reward is to give back to try and help the hard working folks behind the scenes who work tirelessly to help save current and future lives – the lives of the people we call “our families.”
5. How can someone become a Patient Advocate?
Anyone can be a patient advocate. It seems there are a lot more advocates who are actually the patient themselves. I am simply a Patient Advocate from the caregiver perspective. I have never had chemo or been sidelined by crippling symptoms. I do, however, know the toll it takes financially, physically, spiritually, and mentally. Cancer is an insidious disease but I take great pride knowing that lymphoma research is leading the way for all of cancer’s demise. I am most proud of the lymphoma cancer community and the fine people working on LEO across the United States, expertly led by Dr. James Cerhan and Dr. Christopher Flowers. They have your backs and fronts and sides. I am grateful.