“Instruction does much, but encouragement everything.” – Johann Wolfgang von Goethe
Last night Dave and I attended a MM support group holiday meeting near Spring Hill, Florida, complete with a delicious catered meal and a sponsored patient ambassador presentation.
Two years ago when I came to our in-laws for the holidays I was invited to join this group for the holiday meeting by Pat Killingsworth. Pat and I had had correspondence but had never met, so I was excited to go. I had never been to a “support group” before. Dave, unfortunately was experiencing a really bad cold and you know the rules. Sick people stay home! So I went solo and had an amazing evening with others battling this disease. It was very inspirational and uplifting and I made new friends. Always a good thing.
So this year we were invited again and this time Dave got to go with me. I told him that he would be an inspiration to those newly diagnosed and struggling with MM. He was. He was actually excited to meet others, like himself. It’s heartening for me to see him in the place he is now. The first thing that happened of course was a couple wondering which one of us had MM. That ALWAYS makes Dave smile (me too!).
On the evening’s agenda was a presentation from a patient ambassador from North Carolina, Sandy Hirsch. She was dynamic and energetic. She did a great job. Her very personal story from finding out, to delay telling her family so as not to spoil a trip scheduled, to telling them, a second opinion, getting treatment, her particular tribulations in that, the occasional “pity party” she allows herself, to her creating a support group of over 100 members from a small group of 3, to where she is now and taking each day with grace and appreciation. She like the rest of us, doesn’t know what her future holds, but while she is able, she will live it and share it with those who are on their own MM journey. She has already left her mark on this community and I hope she continues to for a very long, long time.
So what are patient ambassadors? How does it all work?
Sometimes folks are critical of this program because it is pharmaceutical sponsored. I get it, I do. But I’d like to see if we can step back and take a look at what’s behind these programs, not just WHO is behind them.
Cancer is a scary disease in general. When people learn they have cancer, they are more often than not, pretty terrified. Patient Ambassador programs are highly regulated by the FDA. The rules are pretty intense and the lawyers involved are many. The basic idea is to provide the audience with a hopeful message. To provide inspiration to others, like them, battling a particular form of the disease. These ambassadors are sent out to groups who might benefit from hearing their story of finding out they had cancer, their fear and struggles, and how they overcame whatever their hurdles were to be standing there now offering hope. They do not promote nor endorse the pharmas or the drugs they took. Their training requires they learn what they can and cannot say as a “paid” speaker in a Q&A session that generally follows the presentation. They are invited.
So what is paid and why? They have been asked if they would like to share their story. Their time is compensated during a FDA training process and their story scrutinized by attorneys to be FDA compliant. It’s a delicate balance to take someone’s story and modify it to meet these guidelines, while still having a honest portrayal to convey what the ambassador feels is important to share with their audience.
When asked to go and speak, their expenses to drive or fly are covered and they are given a small honorarium for their time. Truly folks, it’s not even something you would consider a second job income or to in any way to become beholden to the pharma. And truth be told, most would do it for nothing and just have their expenses covered. They are that dedicated in their personality to give back to the MM community, which is why they are often asked to participate in this type of program.
So when you read, hear, or are in the audience of a pharmaceutical sponsored speaker known as a patient ambassador, realize that they are grateful to be well enough to stand before you and share their very personal journey that is still ongoing. That most of us on the MM journey are not on one drug, but many. It’s pharmas public relations give back to a community whose research and drugs they hope are helping. But putting all that aside, listen to their story and I’m quite certain you will relate and feel connected. You might make a new friend, feel more hopeful about your own situation, expand your perspective or just plain enjoy the evening.
I get the sometimes cynical love hate/hate relationship we can have with drug manufacturers, I do (man I really do!). However, the patient ambassadors are regular folks, like you and me, who are truly honored to share their story with you, to meet you and hear yours. To give you a hug and brighten your day. And believe me, you brighten theirs.
“Our prime purpose in this life is to help others. And if you can’t help them, at least don’t hurt them.” – Dali Llama