Synapticure

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lgelb

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Except for some purportedly free care coordination, Synapticure/CareND is a for-profit virtual provider network, resembling hundreds of others. They refer patients to certain academic medical centers. and put together virtual care teams whose services are reimbursed by insurance or cash, like anywhere else. The fact that they were started by a P/CALS couple that also runs a not-for-profit, guarantees nothing, and their web site is rather coy about the financial aspects of "partnerships" with clinics, among other concerns.

To keep the playing field level, we do not allow the use of these forums for commercial marketing. If you wish to recommend a professional or center by name, please continue to do so and provide your reasons. This is a good place to remember the Golden Rule -- make suggestions that you can stand behind, as you would ask of others.

Virtual care is available through most regional health networks, though the end of the Covid PHE will bring some changes in reimbursement levels. The vast majority of equipment needs can be justified with at worst a single in-person visit, esp. if you coordinate visits within a day.

On line or off, if your neuro cannot support your equipment needs, do what you can through your PCP (most things), and find a neuro that will support what a neuro has to.

Best,
Laurie
 
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We had a meeting with Synapticure when we left the Clinic and were assembling a care team. I explained we were gathering information. The rep asked me for our insurance details at least 3 times. I told the rep we have Aetna Medicare Advantage, when she asked at the beginning of the meeting, but she wanted the cards. I told her we were just gathering information, she still wanted to see the cards. I did not get a good feeling about her persistence.
My understanding is that they will pull together a care team of health care providers. Every hcp would be telehealth.
I did not see any benefit for us since Summit Health is a system of specialists and offers telehealth. So I thanked her but said there would be no benefit to us.
And, telehealth has its limits. Our pulmonologist kindly explained he cannot safely prescribe medication without an examination. My PALS is now on hospice so that the HCP can come to the house.
If you live in a rural area you could ask your local hospital (LCSW or Patient Advocate Services) to help you put together a team of specialists.
 
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I think if you live in rural areas pulling together a group of knowledgeable specialists can be difficult.

Laurie makes some good points but like any service whether people use it or not is entirely up to the individual. All I know is Brain and Sandra have done more to advocate for the ALS community than anyone I can think of since the ice bucket challenge.
 
saying something is a business is an important point and being a business is not a bad thing. Since they became known for their charity/ advocacy efforts I do think sometimes the perception of synapticure can be a little blurry for some.

clearly they saw a need and turned that knowledge into their business. Good for them. It isn’t the answer for everyone and maybe even shouldn’t be the first thing people try.

since it is a for profit it is in a different category than other organizations we speak of here like CCALS and Team Gleason. They also do something different
 
Was going to say the same thing about for profit businesses. Remind me, is this forum nonprofit?
 
I believe so. It says this on the bottom of the page All donations go towards community maintenance and upkeep.
 
Hmmm. I think that is for those wishing to make a donation, not the business itself. Usually a .com ending and multiple commercials are indicative of for profit organizations. Of course it doesn’t matter because the forum serves such an important purpose.

I guess the point I’m stumbling to make is that if you choose or are otherwise unable to participate in ALS clinics—which are usually done 3 months or even longer apart—quickly assembling a team of experts either by yourself or through other advocacy groups can be very time consuming and frustrating, especially for those in rural areas.

Nonprofit advocacy groups that can theoretically do so quickly and efficiently without regard for geography are few and far between. A couple of years ago I asked a now deceased pALS friend of mine if the one Association staff person assigned for most of north Florida had the ability to do so since I was looking for alternatives to Clinic, and she said, and I quote, “hell no.”

Every family affected by MND must make their own decisions, but personally I feel the creation of synapticure fills an undermet need.
 
I agree, Kevin. I've known CALS/PALS who were delighted with Synapticure. I admire Brian so much for all he has done for the ALS community. Did you read the article in People Magazine?

IMO, the more resources we have, both profit and non-profit, the better service we will get and the more exposure this horrible disease will get.
 
Each person is an individual with different needs absolutely. If you have seen my comments on ALSA you know I don’t think they are helpful toPALS in Massachusetts. Florida apparently is the same. No one said synapticure does not have a place. However not everyone has the need for it some do and they should use it.

you will have to ask David about finances. None of the moderators receive any compensation The history of this forum is not a business venture. It was originally run by the Canadian ALS organization. They decided to close it down. Al Pettit was a Canadian PALS who wanted to save it and asked David to help him. Al moderated the forum until his death in 2012

everyone should use the resources that work best for them
 
Nikki, I agree. The more resources, the better. Everyone has to figure out what best suits them.
 
Wow! I didn't realize the moderators didn't receive compensation! Thank you moderators for all you do!!
You all do a wonderful job!
 
I have some experience with Synapticure and would be happy to share it. Your mileage may vary.

It was recommended enthusiastically by a PALS I met through I Am ALS. I had difficulty figuring out online (but eventually succeeded) that I Am ALS is non-profit but Syn. is for-profit. I think there should be an About page that makes this super-clear.

From my initial contact it took about a month to learn they offer fin. assistance. In fairness most of that time was over the Dec. break. Once I found out, I got approved in less than 24 hrs, after an interview that took about 30-45 min. I did not have to fill out forms, I just answered the questions and signed something to verify. They asked about 401K but it didn't enter into the eligibility decision (NY Medicaid didn't even ask, btw). My spouse was the major earner but got a slow start with 401K because of Bach., Master's with thesis, PhD, 3 postdocs, 1 5-yr glorified postdoc, and changing countries multiple times. I don't want to wipe out his 401K with my illness. We were both laid off right before COVID, and then age discrimination was brutal. All his relatives were very long-lived.

One thing that appealed to meat Syn. is that it is easier to get a quick appt with my neuro than at the centers.

I love my Syn. neuro. She's great about answering questions and I never feel stupid. In fact my Syn. social worker said the same thing.

I've had a terrible time getting an ins. prior auth to purchase a rollator (I'm waaay overdue to return the loaner). Syn. worked with me to get it authorized (after one quasi-denial - ins. wanted me to rent a two-wheeled walker). In fact I ordered it yesterday and it will be delivered tomorrow by 10 pm. I chose the Lumex Junior. My family will add holes to raise the height (got the idea from the online reviews). It is by far the narrowest rollator known to man and this will help me get into my tiny bathroom safely. I am 5'2". I will be reimbursed by ins. for most or all (~$157) within 3 months (in theory! Stay tuned!).

Syn. stuck with me through the iterative process. When I requested a copy of the forms they had submitted, they promptly sent them to me, and they were invaluable when I was contacting my ins. co.

Unfortunately, they've decided not to help me with a similar process to buy a fully elec. bed with reverse Trellendenberg (sp?). My new plan is to try to work with my new ALS Center (3.25 hrs vs. 2 hrs for old one). My primary is not good with paperwork!

Before their bed decision I had decided Syn. would be MY neuro -- but now I feel unsure again. However, neither Syn. nor new Center has objected to me working with both.

A bit more detail:

- There is no insurance in my state that Syn. works with yet, but they are apparently working on adding more ins. companies thick and fast.

- My impression is that they may not actually be turning a profit yet but so far, the bed issue is the only negative I've experienced. In general, they seem to prioritize good care over profit. (The bed problem is actually more basic, in my county, DME vendors of big ticket items require out of pocket payments - that is, their policy is not to submit anything to Medicare.)

- I was able to be honest with the neuro about the problems I had at my old Center and she helped me interpret some weirdnesses, and help me get helpful perspective. (She knows some of the cast of characters.)

- When I was having problems with my new feeding tube, she was the only person willing to look at the photos I sent her and my other providers, and she contacted me on the weekend with helpful guidance.

- She has ordered any meds I need, promptly, no problem.

- Before each appt., they have me fill out a pretty simple questionnaire. I send them my updated med spreadsheet and write down what questions and topics I'd like to address in the appt. The neuro allows the conversation to flow freely but discreetly makes sure we hit all my topics.

- She sometimes takes the initiative to ask if I would like this or that, e.g. Nystatin powder for my brand-new little belly rolls which were getting itchy.

- I can request an extra appt. with her whenever I need it.

- The person who interviewed me for fin. assistance told me her specialty is getting ins. denials resolved.

- The social worker is my main point of contact. She is very responsive to email and phone msgs, and when she was going to be away for a week, she gave me two cover colleagues, one of whom did indeed step up to the plate during her absence.

- For me, telemed is a boon. I get bad back pain from long car rides, and I find it exhausting to go to a Center.

- I hate their portal. Before I knew they had one, I sent them records with a free browser extension encrypter. Now, I could use their portal, but to be honest I'm currently sending attachments through regular email (when needed), because I want to concentrate on getting ready for further progression and enjoying life. (Note, one of the two competing medical institutions in my county has an even worse portal.)

Please feel free to ask me about anything I might have left out and I'll do my best to answer.
 
My point was that we should not reflexively recommend any toolboxes and that every choice carries an opportunity cost. We can count up the pro and con votes for UCSF or Northwestern, too, but we don't come here and say, "Everyone should try Northwestern."

Many P/CALS are not fully leveraging their PCPs/pre-ALS specialists, and the resources that come with them.

If you rely on an ALS clinic [on line or off] for the bulk of your needs, you likely miss out on services/products that are actually easier to access and/or could do more to help. And you're definitely overpaying for something because the ALS ecosystem is not about value.

Synapticure messaging plays off the frustration we all share -- the lack of effective treatment options. But as noted here often, there is much you can do -- that's YOU, not any third party, to improve your quality and quantity of life. I'm not talking about meditation or happytalk, either.

Any entity, for profit or not, that bills itself as an ALS content/services hub, owes it to you, to explicitly acknowledge where the handoffs are, and point toward the ball -- not themselves.

Mupstate, the Synapticure Web site does mention insurance networks they work with in general terms (like "Blue Cross," which is silly, because they are very different by state even before you get to plan designs, and some states have a separate Blue Shield plan). As always, you would want to verify who covers what.
 
Many P/CALS are not fully leveraging their PCPs/pre-ALS specialists, and the resources that come with them. Lgelb

Yes yes yes. If you have any serious disease why would you settle for a physician visit once every three months!!!! As knowledge of ALS increases, more neurologists and internists will be able to support PALS on demand, as it should be. Our neurologist not affiliated with a clinic, correctly diagnosed Tom with ALS.

What care do you need. How frequently do you need support. The clinics are good for getting PALS into clinical trials. But they dont have magic skills, and 4 times a year in my view is ridiculous.
 
Here is my experience at my local ALSA meetings which are held once a month (via Zoom since Covid). Even before Covid, the presentations were weak. They came in with an elder law attorney, a nutritionist who told us to eat cake and ice cream, a RT who didn't know how to use the Trilogy he was demonstrating......it goes on and on.

During these meetings (I attended to get to know other people with ALS and their caregivers) our questions were answered by, "ask your doctor." The new PALS were mostly diagnosed at Mayo Clinic, University of Florida or up North (we have 40% of our Winter population who live elsewhere in the Summer. Many of us got tired of driving 2.5 hours each way to Mayo Clinic or longer to University of Florida.

I decided, early on, to put together a local team. I didn't drop Mayo but I didn't rely on them to help with my day-to-day needs.

The problem I noted was that many PALS/CALS had absolutely no knowledge of the disease, were so stressed out that they made haste decisions that drained their finances, and had fast progression rates. Over 50% of the original PALS in my local group dealt with moderate to severe pain which made the trek to Jacksonville even harder. My pain management doctor, who is also a neurologist, agreed to see local PALS. He started with three ALS patients and helped them get PWCs. He wrote orders for Pulmonary function tests and ABG tests, made referrals to pulmonologists, and worked hard to help them manage pain. He was against cannabis until I convinced him he could reduce opioids. So he went out and got certified and hired two doctors to manage the medical cannabis side of his practice.

I see him every three months. He's only a 15-30 minute drive, depending on the time of year and events in the area. I am changing pulmonologists this year since my current one is very close to retirement. The only doctor I really miss from Mayo is my ENT. She solved a lot of problems for me. My PCP picked up the slack and continued writing the Rx for my GERD meds. I also found a local psychiatrist who has counselors on Board. The big problem is most of these doctors don't do remote visits. My PCP does. I'm working with my psychiatrist/counselor to do the same. I've had slow progression so I had time to think things through and arrange changes in care. Some do not.

The more exposure this disease gets, the more doctors will understand how important it is for quick evaluation. Our condo is working on a list of available doctors who take new patients and their specialties. I think this is a great idea.

I would not hesitate to recommend Mayo Clinic for diagnosis and for continuing care as long as the drive is not too long. My reason being they have every type of doctor an ALS patient would need. The big problem that's not unique to them is now that Covid restrictions have been relaxed, their waiting list for new patients is long.
 
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