One of the common frustrations with our current medical system exists on the access to treatment front. A had an endoscopy & colonoscopy on Monday. The hospital required a copy of her new birth certificate and the legal order of adoption in order for my wife to authorize the procedure. They would never require this of a child in their birth parents’ care. What happens to adoptees being equal to others? What would have happened if we could not provide both? Would they have denied the surgery?
For me, this comes back to the question of access for services. Has there been a rash of cases where people pick a random kid up off the street, make them go through the bowel clean out process, and take them in for a colonoscopy & endoscopy? I know there are some seriously mentally ill people in the world, but this crazy would need a whole new word to describe it.
I question the reason and the logic for the imposition of this barrier to treatment.
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Example 2 of a Barrier to Treatment:
Last week, I wrote my neurologist to say I was going to run out of adderall before my visit later this month. He sent me a script. Woohoo.
On Thursday, I found out I needed prior authorization again. His office called it in the same day. Then on Tuesday, I got a letter from my insurance company saying the prior authorization was denied because use of adderall is experimental for MS patients. After calling and going through menu hell, transfer hell and finally menu transfer hell for an hour, I was told to write a letter for reconsideration and mail it or fax it. They then had 30 days to respond. How can one get through these types of barriers quicker than 30 days? With 3 days worth of meds left, I wrote and faxed this because I did not have 30 days to wait (leaving off header and sign off junk):
I have taken Adderall XR since January 2010 to treat both my ADD and fatigue resulting from my Multiple Sclerosis. It has allowed me to continue to work a full time job managing a multi-year project.
Suddenly considering this drug experimental seems bizarre. As I look at patientslikeme.com, it appears I am not alone taking adderallXR for symptoms resulting from MS. There is a more than statistically significant rate of success for MS patients using it to treat fatigue, cognitive impairment and brain fog. This web page contains the results of 318 MS patients taking it. https://www.patientslikeme.com/treatments/show/3597#overview
Taking this drug has allowed me to work a full time job (no given with MS), go home to help raise three medically fragile, adopted and fostered children, and write as hobby which has lead me to a position on the American Board of Internal Medicine and the Team of Advisors for research at patientslikeme.com. Having this medication suddenly denied the week I need it refilled seems ridiculously bad timing.
Please reconsider this designation and let me know so I can fill the prescription.
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It was approved the next morning: Barrier Cleared.
What I find daunting is the prospect of going through the phone system after running out of medicine to help with maintaining attention. At that point, a patient who needs the drug would be denied simply because they need the drug. Thankfully, I had two days worth of medication left to allow me patience to go through phone system and write a letter for reconsideration. It just seems odd to deny the doctors as they put in for prior approval and requiring the request come from the patient. I am all for empowering the patients, but I also recognize our limits in knowing what is needed to best treat our medical conditions.
My neurologist wrote them too after it was approved to give them research to show the efficacy of adderall for treating MS symptoms.
This past week, an interview I had for Patientslikeme.com was posted for their blog. I am posting it here too because it goes into some of the history of this blog and how I came up with the name “The Life Well Lived.” Patientslikeme.com is a valuable site for patients wishing to track their conditions and treatments as well as compare experiences with others including fellow patients, doctors and researchers. The interview was posted on the website’s MS message board, and the entire thread is available at:
At PatientsLikeMe, we believe that the patient voice is what can change healthcare for good, so we’re always excited when our members take the time to talk about their personal stories with the community. This week, Geof, a PatientsLikeMe multiple sclerosis (MS) community member with a big heart and an even bigger family, shared his health journey, his philosophy on giving, and the meaning behind his username life well lived.
When were you first diagnosed with MS? What was it like? How did it impact your day-to-day life?
To be honest, when I was diagnosed, it was a relief. For months I had headaches which only went away with sleep. The worst part was having them wake me up in the middle of the night. I wanted to scream, “Body! Why are you waking me up to tell me to sleep?” Then came the dizziness, and finally the double vision. I was able to get an MRI, but I was having trouble getting an appointment with a neurologist (my primary care physician said I needed one when he ordered the MRI). The radiologist said the results could only be released to my doctor.
So naturally, after thinking about it for a day and discussing with my wife, I called up and said I needed the write-up of the results because I was changing doctors. As I read the three paragraph report, it became clear the radiologist writing up the report thought one of three things could be happening: 1) brain infection (my wife and I thought this was very unlikely as I would be much sicker), 2) Multiple Sclerosis or 3) cancer, probably testicular. If it was option 3, I was screwed, and not in a good way. The cancer would have had to spread from my groin to my head.
So we hoped for option 2, Multiple Sclerosis. Armed with the report, I went back to my primary care physician, and he started making phone calls. A week later I was in Hopkins, relieved to have MS. How many can say that?
I started treatment with Copaxone, and otherwise rejoined a normal life – well, normal for me, as we had just started fostering my daughter a couple of months earlier. I took my injections in front of her so she could learn not to fear shots. As a heart patient, she was looking forward to a long medical history, and I wanted to show her shots can be tolerated.
You mentioned you have two wonderful children – can you tell us a little about them?
On our first date, I asked my now wife how her life would be different in five years if it went as she would wish. She, being a pediatric nurse at Hopkins, said she would be a foster parent for medically fragile children. Five years after our first date and two years after getting married, we took in our first foster daughter, whom we later adopted. Her history includes five heart surgeries, a stroke, and numerous other medical incidents. We also took in a premie/shaken boy a year after our foster daughter, and we adopted him too. Finally, we took in a premie blind girl, whom we will likely adopt next year.
You say on your PatientsLikeMe profile that “life well lived” would be the title of your life’s biography – can you tell us why that is?
The title comes from a thread on a Washington Redskin’s message board that asked members what words they would use to title a book about their lives. In a moment of pure hubris, I replied “The Life Well Lived.” This thread was long before my now wife and I began fostering, and it was before MS came into my life.
After my Latin teacher in high school pulled me aside one day for a candid appraisal, I resigned myself to finding ways to make what abilities I have matter most. Ms. Pelosi told me, “Geof, I’ve taught you for three years now, and I’ve watched you play soccer for the past two. You are hardworking enough, smart enough, and athletic enough to be good at whatever you choose to do with your life, but at the highest levels, you won’t be the best.” Some might be devastated if their favorite teacher told them this, but I took it to mean I needed to find something extraordinary at which merely being good was superb. So when my now wife mentioned fostering sick kids, I thought it sounded ideal. So many kids need homes, and so many potential parents are only looking for healthy kids who look like them.
Raising kids whose medical problems sometimes puts them on the outside of society became my life well lived, using my skills in a way that matters, even if I am not the “best at the highest level.”
Now the life well lived is not the name of my biography, but it is the name of my blog (thelifewelllived.net). Of course, the life well lived is now the life enjoyed by our family rather than just mine, as my life well lived should not be one lived in isolation.
It looks like you use the tracking tools on PatientsLikeme a bunch, especially your Multiple Sclerosis Rating Scale (MSRS). How has the ability to track what’s changing impacted you and your health?
I’ve used the site for tracking a variety of things about my MS. I probably use the medication tracking the most, as it is far easier to just print and bring it to appointments rather than rely on my suspect memory.
I have used the MSRS primarily when I feel blue or my wife is lamenting the progress of my MS. It’s nice to be able to go back and say, “This isn’t new, and while I may not be as good as I once was, I’m in pretty good shape for the shape I’m in.” It is also nice to occasionally see when things have improved, and believe it or not, some symptoms have improved. Most of the time, it is a reminder my original neurologist was probably correct when he said I have aggressive MS.
If you could share anything with the MS community as a whole, what would your message be?
The more I read about any chronic illness, the more clear it seems. Those who deal best with illnesses seem to be those who find a way to give. Whether it is a kind word or a hug to a kid feeling unloved, the act of giving forces us to look beyond our illnesses, beyond all that we can no longer do, so that we can remember our value to society. So often the temptation is to fall into the “woe is me” camp, but we can be so much more. When one looks for ways to give, one is forced to look at what we can still do. This focus seems so much healthier than dwelling on what we have lost and are losing.
I have said for years I have gotten far more from my kids than I put into them. I got a reason to keep going when situations are rough. I can see their strength and draw inspiration. I can see little tricks work for them and take solace I have helped them deal with life. Giving is no zero sum game. Somehow, giving leads to both sides of our exchange ending up with more than we had before the gift.
So my advice for the MS community as a whole is find something you can still do to make somebody else’s life a little better. I know we are in the age of “Have to take care of myself first,” but how often does the concern for self lead to inward vision missing the potential gains from looking out for others?
When I posted these types of thoughts on the same board as the “title your biography” thread, I was dismissed as a hippy philanthropist. Given that I am not rich in money, I have never received such a rich compliment in my life. The irony is the giving is what allows me to deal with my MS. The giving gifts me with a happier perspective.
