What are you savvy about?
I had been a weight lifter and runner for years. I ate very healthy and took vitamins. But I’m my late 30’s I began to notice a rash on the top of my right foot. I ignored it, and continued my two hours a day of weight lifting, and running 3 miles a day. At age 40, the rash had spread to cover all of the joints on my torso. Sometimes it was smooth brown blotches, sometimes it was a bumpy purple. I had joint pain, which Adrenalin had been masking for years. It was a long journey from symptoms to diagnosis, and that rash, granuloma annullare, which I hated, became my best tool, because the doctors knew something autoimmune was going on, but didn’t know what. Finally at age 45 I was diagnosed with rheumatoid arthritis, sjogren’s syndrome, fibromyalgia and degenerative disc disease. A few years later I was diagnosed with a gluten intolerance.
What is one of your most memorable advocacy experiences?
My most memorable experience was going to a local town hall meeting in Redbank, NJ, to speak to my senator, because I was unable to afford a treatment drug that I desperately needed. At the time I was in a wheelchair- I spent the better part of a year in a wheelchair, just three years after my diagnosis.
I needed my Senator, Frank Pallone, to understand that healthcare was not affordable. That I could not afford the treatment drug I needed because the copay was hundreds of dollars a month, and I was terrified of losing my home. I was shouted down by hundreds of people who were bussed in to that event, who were from another state and other towns in NJ, but as scared as I was, I was undaunted. A video of my message to my Senator went viral around the world, and I heard from people from as far as China and Russia, not to mention my own European friends in France and the UK. Most people are unaware how broken US healthcare is, until they are very sick, desperately need it.
What's an example from your own life of how healthcare is not user-friendly?
We might have the best specialists and hospitals, but affordable access to healthcare for the patient is practically non-existent. The copay for my treatment drug, after my insurance pays what they are willing to cover, is $1,500.00 per month. That is only because I am an American. If I lived in Canada, the UK or Australia, I would never pay more than $49.00 a month for the same drug, if I had to pay anything at all. Also, with my diagnoses, the copays for all of the specialists I have to see is exorbitant. But I need them to live, literally. So I go without food and without medication often. Without a good treatment drug I have a very poor quality of life. With proper medication, I have quite a good quality of life.
Why do you think patient insights matter?
Patient insights matter for many reasons. Doctors often don’t know the emotional strain of living with chronic illness, and that is a critical thing to address. Personally I get a lot from online support groups, just talking to people who are going through the same things that I go through. Drug companies need to know what side affects we have to their treatments. Law makers need to know the financial burden placed upon a family that has a chronically ill family member.
What excites you about being a Savvy Co-op Member?
I’m very impressed with this initiative. Connecting patients to researchers allows us to have input into future developments of treatments and medications, and hopefully to other tools.
What hidden talent do you have that others don’t know about?
I have good editing skills. I speak English and Italian. In my career I have been a good manager of people. I have a great deal of empathy for others, and always have had since I was a child, and my parents impressed upon us the need to help those less fortunate than we are. I am an artist, and I love to garden.
If you could give one piece of advice to people just getting started sharing their healthcare journey, what would it be?
Educate yourself. Read everything you can about your illness and available treatments. Join a support group. Organize your thoughts and write a list of questions every time you have a doctor appointment, because it is easy to forget. Try to take a trusted loved one to your first few appointments. You’d be surprised at how much you cannot absorb, and a loved one will help you remember all that the doctor said. Also, bring your family - a husband, wife, partner or grown child- into learning your illnesses with you. Chronic illness affects the whole family, so everyone needs to learn about it.
Which term(s) do you prefer to describe someone who utilizes healthcare?