Hi,
My family will be returning to NY in July and am searching for an endocrinologist for my T1D child. Appreciate any recommendation, ideally based in NYC and not too expensive because we don’t have insurance and don’t intend to apply for any gov program.
We also looking to get the omnipod insulin pump, wonder if anyone know how much it cost without insurance?
Thanks in advance!
Micky
I have no real experience with OmniPod but it appears that the PDM (controller) is about $800 USD and a month of Pods is $300USD without insurance. In addition to this cost will be the insulin. For example a 10ml vial of Humalog is $375USD without insurance.
Perhaps someone with experience in NYC will be able to recommend an endo.
Hi Micky, welcome to the forum!
No need to share more than you’re comfortable with but sometimes people can be more helpful with a little more detail. Is this a recent diagnosis, what insulin regimen is your child on, and how old is he or she? There are a lot of factors in switching from injections to pumping, and knowing more about your situation would help us to help you.
The single biggest issue here, which you don’t mention, is CGM, or Continuous Glucose Monitoring. Most current pumps, including the Ominpod 5, are designed to integrate with a CGM system (the Dexcom 6 in the case of Omnipod) to provide real-time data that allows the pump to dynamically respond to events like highs and lows as well as modifying the flow on a continuous basis to conform to the vagaries of basal needs between meals. Before widespread use of CGMs, pumps were built to be manually programmed to approximate the patient’s basal requirements, and you’d enter coefficients for meal boluses and correction doses allowing the pump “wizard” to do those calculations for you. Most pumps still have you put all that stuff in so they can operate in “manual mode” if necessary, but even that is far easier if you have a CGM to provide the data you need. Speaking as one who transitioned from injections to a pump back when finger-sticks were all we had, a CGM would have made that whole transition vastly easier, over maybe a week rather than the 6-8 weeks it took me to get dialed in.
Unfortunately the Dexcom system involves a whole other set of expenses: sensors need to be replaced every 10 days and transmitters approx. every 3 months. None of those items are cheap.
But here’s the thing. You can use the pump without a CGM, but you can also use a CGM without a pump. It’s a stand-alone device. And if I were confronted with a choice between the two due to expense, I would go back to injections and keep the CGM every time. It’s at least as valuable to a parent as to a patient, because it allows you to “share” the information in realtime on your smartphone, and it provides alarms and indicators that can alert you to things like overnight hypos and other scary stuff in time to take action. A pump on its own is not proof against those things, even if it provides you more settings for matching your child’s basal patterns. And getting those settings dialed in without a CGM to provide continuous data is also a way bigger challenge. A pump on its own is only as good as its settings, and even the new looping systems are not bulletproof.
So, not knowing more about your level of knowledge or experience, I would strongly recommend considering a CGM system ahead of starting with a pump. It’s worth noting that if pump integration is not a consideration, there are cheaper CGM options than Dexcom, notably FreeStyle Libre, which I believe now does also have a “share” feature.
Another vote in support of CGM >>> better than a pump on its own.
CGM can guide therapy. Even half a dozen injections per day with a pen, guided by the CGM results, is preferable to half a dozen (or more) finger pokes that still only provide a picture from moment in time.
Me too!
I love my pump, but I’m also team “CGM is greater than pump alone!”
Are you aware that both Dexcom and Omnipod offer patient assistance programs? They offer steep discounts to those with no insurance, or really sucky private insurance, and who meet low income standards. I might be off the mark here, though, if you’re considering paying out of pocket. For Omnipod, it’s currently only valid for their oldest, no frills system. But I image with the recent reheat of Omnipod 5, that the Dash system will soon be included as well.
If you’re rich (it takes a lot more money to be rich in NYC than anywhere else in the world) and don’t mind the huge up front costs of concierge care, there are docs who will take patients.
NY State and NYC both have easily accessible insurance (CHIP program) for otherwise uninsured children. No waiting period even.
Without any insurance and without a concierge plan, your kid’s only health care in the city will be ERs and Urgent Care clinics, and it’s unlikely that either would lead you to an Omnipod.
I myself went basically uninsured for more than a decade (thanks to preexisting condition exclusions in my employers policies, I basically had no endo care or lab tests) and it is possible to get by on OTC R/N insulin. It is not a rational choice when other options are available.
Keeping in mind the OP is a parent rather than a patient, that adds a whole other layer of difficulty that puts it even farther out of court, unless the parent is way more experienced with managing insulin therapy than my impression of @Micky1 so far would indicate.
Also the OP’s reason for going the OOP route seems to be ideological, or at least that’s what this seems to suggest: “we … don’t intend to apply for any gov program.” That’s one reason I’m hoping they’ll weigh in with more detail about their situation, because my initial impression is that this person isn’t fully aware of the challenges and risks involved. This is a serious, expensive and potentially deadly diagnosis, increasingly so depending on how young the child is, and managing it as a parent adds whole new dimensions of complexity, emotionally as well as practically, over doing it for yourself, which is hard enough. I’m trying to be helpful without getting drawn into side issues, but having spent a decade or so reading posts from overwhelmed parents on these forums, my gut response is more along the lines of “Just set all that aside because you’re going to need help from every resource you can lay hands on.”
Good point, I listened to Dr. Saleh Adi on a Tidepool video on setting basal rates. It is really interesting how the basal needs change as a child ages. As to @Micky1 ‘s original question, I can’t imagine having enough income to live in NYC and not have insurance coverage with a type 1 child.
I feel comfortable managing myself, but to have to keep my child alive would be a whole different thing. Kudos to al the parents of T1 children, you are the best.
You could try Naomi Berrie Diabetes Center at Columbia University on 165th Street. I’m afraid they are expensive but they have several diabetes specialists there including specialists for kids, and they support Omnipod as well as DIY Loop.
There are also manufacturer discount offers. I get 3 vials novolog for $99. Cash pay only, not with insurance. My insurance covers humalog but much higher cost.
Thanks everyone for the information. Let me provide some additional details. We are New Yorkers living in Asia where only the Medtronic pump is available but my daughter doesn’t like the tubes. She’s very capable of manage T1D on her own with CGM (Libre but we also have Dexcom available).
Nowhere near rich and we pay Federal and NY State taxes (thanks to US global tax). Based on my reading, I don’t think we qualify for CHIP (not-NY resident). We do visit home twice a year so we can go back to see the doctor and pickup supplies for the pump. Insulin and CGM are covered by our local insurance.
I also need to check if i can get 6 months supplies in one go. since we are paying out of our pocket, I’m hoping we could.
Does anyone have a contact from Omnipod sales who I check?
Thanks again for everyone’s support!
I was just quoted $195 for the PDM for an Omnipod without insurance. You can also order your preferred choice of insulin through Canada much cheaper than paying for it in the US. But a lot of the companies have discount programs available.
This is a list of assistance programs on this site.