Most people who live with a chronic illness end up with a lot of experience when it comes to dealing with healthcare. How would you improve or change your healthcare experience? What would you like to see happening during medical visits with your healthcare team? How about when dealing with your health insurance companies? What’s your Healthcare Wish List or Biggest Frustration? Today is the day to share it all!
Healthcare: The Good…
We are very, very lucky. Our healthcare experience has been overwhelmingly good. We have a wonderful pediatrician who was instrumental in V getting promptly and accurately diagnosed with T1D. Our children’s hospital is outstanding and we received excellent care, support and education when V was hospitalized at diagnosis. V’s Endocrinologist rocks our socks. She listens, does not rush through appointments, answers all our questions, and treats us as equal team members. The Endo clinic has two dedicated pump nurses who are very knowledgeable, experienced, efficient and kind. We have very good insurance through my husband and so far experienced minimal barriers or delays in getting the supplies V needs.
Healthcare: The Bad…
The lack of understanding of T1D by many health care professionals (HCPs) outside of diabetes specialists that we encountered is appalling. So many providers have no clue. Like this very nice nurse as CVS clinic, who treated V not long ago for an ear infection. She was trying to assess if V’s BG had been over 200 that day. I’m pretty sure she was just following the protocol. I tried to politely explain that 1. It’s an extremely lucky day if V’s BG does not go over 200 at some point, and it’s totally normal, and 2. When she’s sick, her BG will run high no matter how aggressively we try to treat it. She told us that if her BG does not come down in a few hours we will need to go to the ER. Umm…No. Seeing that I was not going to agree to this plan, she stood down a little: “If it’s still over 200 in 3 hrs, you will call your doctor, OK?” I said “sure” just to end the conversation, and can we please deal with V’s ear infection now, thankyouverymuch?
Healthcare: The Ugly…
The initial expense of diabetes – the hospital copay, ALL the insulin and supplies at once, a million appointments in the early days, and pump and CGM copays a few months down the road – was a royal bitchslap to our finances. The year of diagnosis we reached the out-of-pocked maximum for the first time ever. The cost of insulin and test strips is absurd, even with our very good insurance. Between all necessary supplies, labs and quarterly Endo appointments, we spend a lot of $ on diabetes every year. But once again, we are lucky and privileged. We have good jobs and good insurance coverage. We can manage. Other people are not so lucky.
How is it that some people have to ration insulin because they cannot afford it? Or not have access to life-saving CGM because Medicare and Medical do not cover it? Or have constant battles with insurance because of ridiculous denials, delays, and screw-ups? It breaks my heart to hear stories about people’s struggles with diabetes because they do not have access to affordable, quality healthcare. It infuriates me when insurance companies create barriers to care and access and make medical decisions based on cost vs. scientific evidence and doctors’ recommendations. Nothing gets my blood boiling more than seeing companies put profit over patients’ health, and sometimes over their lives.
Healthcare: My Wish List
Non-diabetes healthcare providers: Please educate yourselves about T1D and the difference between Type 1 and Type 2. Basic knowledge will suffice, really. When you know about signs and symptoms of T1D and DKA, you can save lives. And if you don’t know much about T1D, please don’t tell us what to do. We can sort it out with our diabetes management team. Also, you need to trust our knowledge and expertise. Chances are we know a lot more about T1D than you do.
Insulin-makers: Get a grip on the cost of insulin. Yes, we understand you need to make money and make your shareholders happy. But you are holding hostage people who cannot live without the medication you make. And your profits keep going up while insulin costs are going up and people’s out-of-pockets costs are going up. There can be a better balance. Curb your greed!
Insurance companies: Don’t try to pretend that you are in it for our health. We are not stupid. But just like drug-makers, there can be a better balance between your need for profit and our need for care and access. Do not make medical decisions or deny access to coverage because you don’t deem it medically necessary – it’s up to our doctors to decide!
Medicare and Medical: COVER CGM. It is not only medically necessary, it can be life-saving, especially for seniors and children who are particularly vulnerable to dangerous highs and lows.
In the long run, everyone benefits from being healthy.