It all sounds so positive, so refreshing, so much the right way to start out a new year. Especially if you have a disease that requires major medical care. A disease that has medications and treatments that are new, groundbreaking, and hopeful—and extraordinarily expensive. A disease like rheumatoid arthritis or juvenile arthritis.
Medications and treatments have changed over the past decades. They are better, they are stronger, they offer and give hope, and yet day after day I hear the same stories.
“My insurance won’t pay for the new biologic medications until I fail all of the old medications.”
“My insurance is cutting back on their payment amount for my toddler’s JA medication and I can’t afford any more out of pocket expense.”
“My insurance cancelled my medication.”
“My insurance keeps going up and I can no longer afford it.”
But wait a minute. We live in America. We take care of those who need help. We are progressive and believe in doing whatever to be pro-active and preventative. Except there is one caveat—only some know how to break through the minutia. Only some get what they need and deserve when it comes to medications and good care.
So my New Year’s Resolution for 2015 is to share with you what I have learned from my journey as a RA patient and JA advocate. And by picking the brains of others; those in the know, those who never give up, who never take no for an answer, those I call “Bulldogs.”
I have some ideas on how you can become a Bulldog; albeit a “Gentle Bulldog.” My definition of a Gentle Bulldog is one who gets what they want without making enemies, stepping on toes or being disrespectful. One who uses finesse to achieve their goals.
And fifteen years into my television career that same Bulldog mentality helped me get what I needed to survive with RA. But first I had to find a Bulldog doctor because health care is a team effort; you and your doctor, or you, your child and their doctor.
Three doctors couldn’t figure out what was wrong with me, but I kept going until I found the doctor who had the diagnosis. And we became a team. I respected his time and efforts and he understood my need to maintain my career in television. I was honest and upfront with him. I came to appointments on time and with questions written down. I understood how busy he was. He in turn was on top of my health care. He monitored me closely. “Do I really have to go for labs again?” I asked during a crazy work schedule. “Yes, Christine, you must get labs.” So I went and never asked that question again because I understood labs were for my health, not his.
After failing medication after medication, my rheumatologist started using two, three or more medications at the same time to halt the RA damage and then used steroids when nothing else would allow me to work.
Some patients and doctors give up, walk away feeling hopeless. My doctor kept saying, “We just have to keep you going Christine, we have to prevent damage.” I understood. Working in the television industry you learn early on that success is based on perseverance.
I traveled a lot with my work and of course my RA would act up because of the travel so he gave me his cell number. I never abused it. But I did use it when necessary and time after time he came to my rescue with good advice, an out of town referral or a medicine.
Our relationship was always based on respect and hope. When I was at my worst, thinking I would never get my life back, he kept me going. “Christine, there are new, exciting medications coming down the research pipeline, we have to hold on.” And seven years later came the Enbrel research program. My doctor fought to get me in and encouraged me to stay even during the tough times. “If you leave the program you won’t get the medication for several years,” he told me. I stayed. When the program ended we both found out that I was on a placebo. Between his attitude and my attitude we were sure I was on half dosage. As a result of his advice I was one of the first to get the full strength medicine and my joints went into remission and have stayed there.
Between my career and my persistent and positive doctor, we proved that a Gentle Bulldog team gets results. Whining and complaining was never an option. Giving up would have been a deal breaker for either of us.
So my New Year’s gift to you is this insider’s knowledge of how to become a Bulldog for you or your kid’s health. A Gentle Bulldog, but a bulldog none-the-less.
When a doctor says there is nothing more they can do for you or your child.
You find another doctor that will be creative and aggressive. If your doctor doesn’t have hope, how will you have hope and without hope, how will you or your child survive?
When an insurance company says you can’t have a medication or treatment because it’s too expensive.
You have the right to appeal. Use it! It’s proven that those who are the most motivated and don’t take no for an answer get the best results. In the television world those who succeed don’t stop asking until somebody says, “STOP!” Win over your insurance contact; you need this person on your team. Talk shorthand. They don’t have hours to listen to your every issue. You pick one strong example, “My toddler cries in pain when he tries to walk,” or, “My daughter is losing her childhood,” or, “My son misses so much school, he will never be able to go to college.” And you tell it with compassion, not anger.
You get them on your side by being understanding, “I know you hear this all the time, but I can’t take care of my baby. Imagine not being able to pick up your child.”
You have compassion for them, “You have a tough job, I understand and appreciate that, but I really need your help and guidance.”
You put yourself in their place, “I know you are just carrying out your companies policies, and I so appreciate your time and efforts, but if you could just offer me any guidance, I am in desperate need of your help.”
You can try a nice follow up note or a thank you message on their phone. Use positivity instead of negativity to get what you or your child needs.
When your insurance company appeal is turned down.
You partner with your doctor. A good doctor will be your #1 team member and help you navigate both your health and the insurance world. Together you will be advocates for you or your child’s health. Two dedicated advocates are always better than one. You ask your doctor to opine (make a decision) on what kind of damage you or your child’s joints or organs can sustain if they don’t give you the medicines your doctor is recommending. You ask your doctor to make sure this information is in your medical records that are housed in his office or hospital so there is evidence if you or your child gets damage that could have been avoided by proper medications.
And most important, you do not get angry or confrontational; that won’t get you anywhere. You don’t want lawyers involved because this is not the time for anyone to be digging in their heels; you want and need the medications for you or your child. Tell your doctor how much you appreciate him or her. Everyone likes positive reinforcement.
Remember, insurance companies are motivated by cost. The patient and doctor must be motived by care.
When all insurance companies have turned you down.
You investigate all of options. You go to the pharmaceutical companies or the charitable organizations and seek help.
Here are a few:
Enbrel (Amgen) patient support: http://www.enbrel.com/ENBREL-support-program.jspx?WT.srch=1, www.amgenassist.com Call 1-888-4ENBREL (1-888-436-2735) Mon. – Fri. from 8:00am – 8:00pm ET to speak to an Enbrel support reimbursement counselor.
Humira (AbbVie) patient support and co-pay savings card: https://www.humira.com/global/starting-humira
Simponi (Janssen): http://www.janssenprescriptionassistance.com/simponi-cost-assistance
The Arthritis Foundation: http://www.arthritis.org/
American College of Rheumatology:
Patient assistance programs for rheumatology drugs: http://www.rheumatology.org/Practice/Clinical/Patients/Patient_Assistance_Programs_for_Rheumatology-Related_Drugs/
Patient Resources from American College of Rheumatology: http://www.rheumatology.org/Practice/Clinical/Patients/Information_for_Patients/
Creaky Joints www.creakyjoints.org
Copay cards & assistance: https://creakyjoints.org/article/copay-cards-assistance/
Email [email protected] or call: (845)348-0400
And most important and my New Year’s message for you: You never give up because that’s what being a “Bulldog” means. We never give up!