Sarah Howard
Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Marketing Manager at T1D Exchange.
Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.
The most time spent is on the phone when I need to replace a sensor, which happens maybe 2-4 times per year. Otherwise, the time would be miniscule.
Before about 6 months ago I spent very little time. Since CIGNA now forcing me to use the incompetent liars at Express Scripts it’s endless and they leave me and others without prescriptions and devices. Someone will get hurt.
I’ve had MUCH, MUCH better service with Edgepark than I ever did with Byram. I receive the correct supplies and have not gone without any, since switching a year ago. Magically Edgepark can supply me with the VariSoft infusion sites that I’ve always used; unlike Byram who said there was no such thing and never sent them the first time each order.
I have had good & satisfactory service with Byram, and unpleasant & unsatisfactory service with Edgepark. Much happier since I switched from one to the other about three years ago.
Interesting question.
The bottom line is that I have spent so much time resolving issues w/ supplies, pump, insulin, billing, trouble shooting…. that I now know who to call, what to say, I keep enough detail so I have “the answers” and the dates and the “secret code words” to rush through the first three levels of blockers and can tell the “supervisor” what they need to do, you know, to help little old me.
“We” can then resolve stuff faster.
Most of the time I spend is badgering my doctor’s office to complete the paperwork required by Medicare for sensors. Good help is, apparently, hard to find.
With Covid, the phone wait times to get access to a person have been quite high. I have tried ordering through the app but it generally doesn’t work because there is always a question I can’t answer to their specifications. I am getting ready to move and it is going to get really difficult. It would be nice if all prescriptions and medical equipment could come from one place.
I agree.
I spend 2-5 hours a week talking to doctors offices, medical supply companies, insurance. Even more of a hassle is this time cannot be planned for or set aside. We have to make calls, wait for replies, call again, sometimes it just comes down to which agent you are able to reach. The good ones really stand out!
There was a change in policy at Tricare at the start of the year, only allowing a one month supply of my Dexcom/Tandem supplies to be sent at a time, when a 3 month supply had been the norm. With longer mailing times and processing, I went without a Dexcom sensor for about 10 days. Multiple calls to Humana (Tricare insurance co) and Solara resulted. Finally Tricare restored the 3 month prescription!
I chose 4-6, but this year has been a nightmare with new distributors and Dr. not billing correctly, etc.
These days between Medicare and supply chain issues it’s a bit of a zoo and can take a week or more to have something delivered. Especially if you want something like a Dexcom sensor or insulin. The insurance companies literally count every drop of insulin and how long each sensor lasts making you wait until the last moment until they will approve an order to be processed. Tha used to be only stressful, however these days I run into an issue when they cannot get a supply delivered in time. This balancing act is put on the back of the T1 diabetic. It’s stressful and should be illegal. As far as I know it isn’t
When you call on the telephone and push button after button, wait on the line for your turn, and then finally get to the person you wanted to speak with at customer service dept., it is truly a test of patience for the patient! I always have my meter and a cup of coffee as I sit waiting, but when the call is completed correctly I am satisfied.
This is all so ridiculous and totally unnecessary. If we he’d single payer with we’d be much better able to deal with greedy big pharma.
Sahran, I’ve been with Cigna for just a year but will stay with them. With their “extra” plan my 90 day supply of insulin is free 3 of my 4 other meds are also no cost. The 4th is $16 per yr. The premium is $600 per yr with no deductible for the med s I take.
that sounds great.
So I am a hear away from Medicare. So far I have heard that Cigna RX is the best plan for T1Ds and Edgepark better for supplies than Bynum? Would you say that is pretty close? Any other tips for choosing a supplemental pan?
I selected 6 hrs. I have made 6 calls to supplies in the last 2 weeks. I agree with Dave’s comment about single payer. My single payer insurance was $752.30/ month. My medicare with G gap plan is $322/ month. It’s a case of getting less for less.
More than 12 hours. Thankfully since switching to Edgepark from Byram I no longer have to worry about receiving the correct supplies. I have been working with Novo Nordisc to qualify for Novolog I can afford. I’d love to stop rationing what I have & can afford.
Every week to 10 days there is some issue I need to deal with. Grrr!
Zero for me. Now if you’d just asked how much time on support *trouble shooting* various DME issues it would have been more like 4-6.
My experience has been 30 minutes to 1 hour. My endo gave me 3 vials of Lyumjev (lispro-aabc) on my last visit to go with the 2 vials of Novolog (from my last 4 vial 90 day supply). Tandem has fantastic customer service and quickly gets my cartridges and infusion sets to me. My only issue I thought I had was when Dexcom changed their distribution and I was forced to use Solara which took a little while but I had 3 months to work that out. Just the other day as I was down to my last 2 sensors I tried to re-order them via the Solara Trace App but the refill availability date was well past my supply expiration so I called them and within twenty minutes I was all set 90 day supply of sensors and two new transmitters. Granted I don’t have them yet but I’m in SoCal, Solara is in SoCal and Dexcom is in SoCal, should be a slam dunk.
Work with your supply chain and do what ever you can to stock pile a buffer of your supplies to eliminate that variable from your T1D game equation.
Really guessed at an answer because I stopped counting. Once working from home became the norm, the amount of time spent waiting on line for the DME suppliers to connect with each other to get a guess estimate answer has more than doubled. Medicare has become so difficult I no longer call.
Some will hold your place in line and call back.
Fighting to live daily is hard enough, add the supplies issues and it can be a deadly combination, but we’re just statistics not people seems to rule.
I should’ve said over 12hrs – I’d be happy if I only spent 10-12hrs a year on the phone dealing with such problems! I must call in my Medtronic order every time to make sure they (the shipper) request a signature upon delivery. So between calling for supplies and insurance or Rx questions, it’s about 90mins a month. More, if there’s a denial to follow-up on. Medtronic could reduce this by requiring a signature for deliveries, but I must request it each time. I’d settle for a ring of the doorbell, but per UPS, drivers are prohibited from ringing a doorbell when they leave a package unless the shipper is paying extra for getting a signature. When I had a regular driver who knew me, he’d ring the doorbell and knock loudly, but the new driver just leaves the box at our doorstep and takes off. We live in a neighborhood that has lots of package theft, and since I make sure I’m home when I am expecting a delivery of sensors, infusion sets or reservoirs, it’s frustrating that my spendy, life-saving delivery might be dumped and left even though I’m here, waiting to receive it. So, I phone in, wait listening to really bad hold music, and hope for the best.
At the moment I am still working on getting a one-month order of Dexcom G6 sensors through Medicare. Medicare has rejected clinical otes from last month two or three times. Only a day ago did I get a statement from a Byram rep that said Medicare regarded the nurse in my endo’s office as a new doctor who hadn’t written the prescription. Those notes are not adequate. I still don’t have approval for an order placed over a month back.
If it was over the past 3 years, I would have answered more than 12 hours. However, this past year has not been too bad (4-6 hrs). Test strips are the thing….. prior authorization and letter of medical necessity for number of strips needed. Ridiculous!! Do they limit the number of oxygen tanks someone needs? All suppliers need to learn the difference between Type 1 and Type 2 diabetics’ supply requirements. Caremark only shows “diabetic” as a condition and then applies Type 2 criteria to the number of strips allowed.
It’s unfortunate that medical supplies are not given priority with the line up of ships in the harbors. For me, the infusion sets I normally use have not been available for a month and Tandem does not know when they will have them in stock.
I took a delivery of another infusion set, but they are difficult for me to use. So, I have been calling Tandem every 1-2 weeks to see if I can exchange the unopened boxes for the ones I normally get. This takes a lot of time, as their hold times are much longer than normal. It’s no wonder, with the shortages they are experiencing!
It usually takes an hour per month, but when I went on Medicare it took 3 months to get everything straightened out.
I’m glad you asked this question. This is my biggest gripe. I spend an inordinate amount of time on the phone dealing with diabetic supply issues. I end up having to call everyone for various issues, Medicare, supplemental health insurance, Dexcom, Tandem, my endocrinologist’s office, Edgepark supplies, even the phone company about my G6 app, which still doesn’t work. I often waste whole days, back to back trying to get issues corrected. And, worst of all, the same issues happen month after month, quarter after quarter. This is no way to spend a vast amount of my precious retirement time.
The past year has been the most time consuming I’ve ever had when it comes to working things out with insurance & pharmacy. The reason it takes so much time is that I can spent 40 minutes on hold with Walgreens only to eventually get disconnected. It’s very frustrating. When I call insurance they don’t seem to have a clue.
Dexcom 6 – took 3 months to get ucla dr to sign quarterly form to insurance to keep getting Dexcom. She refused. Had to find a new dr! Dexcom direct- adhesive skin allergy – spent 3 months! Weekly 2 hour calls and submitting online forms. 30 hours in 1 yr. Omnipod adhesive probs-20 hours a month- after 2 yrs quit. Now on Afrezza- great results for all bolus- but took 2 yrs to find a dr in LosAngeles to write Rx! 2 weeks to receive then. After 17 dr appts in 2 months! Reaching out to president of Afrezza and UCSan Diego T1 support group all helped. Virtual dr appts helped too. USPS slow down is a HUGE burden getting supplies from Dexcom and Afrezza. I am a testimonial to CA AG lawsuit on USPS/Dir Dejoy.
Fyi- finding LOCAL IN STATE COMPOUND PHARMACIES- they carry my Dexcom and Afrezza supplies and send it by local carrier service within 1 hour! I live in LosAngeles so variety of these specialized pharmacies- but check you area- you can call them direct- and move your RX directly to a local in state or in city COMPOUND pharmacy. Resolves USPS issues. You can pick up yourself if u want too!
I would be in a Lot of Trouble if I was not my own advocate! All kinds of issues with the distributor mixing up my order dates; prescriptions being incorrect; pharmacy being unwilling to deal with Medicare for my no-cost insulin…….