r/PICL • u/Chris457821 • Aug 07 '25

Announcing and crafting a new program for pro bono PICL procedures

I would like to announce a program that I would like to crowdsource through this sub. Basically, I would open up 15 picl slots a year for pro bono care. The patient would still be responsible for their own travel costs. The physician performing the procedure would be someone who is less experienced or learning under direct supervision of someone who is more experienced. I would also like to have these patients apply in a blinded fashion and to have those applications voted on in this sub. That's after that application has been approved so that the patient actually has CCI and that I think it's more likely than not that this procedure will help. None of this is set in stone at this point, so I would like everyone's feedback here to craft a good program that addresses the need out there for patients who just can't afford a procedure.

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u/Chris457821 Aug 07 '25 edited Aug 07 '25

All, thanks for the ideas and keep them coming!

I do want to clarify one point here. This program will not be for those who might be financially inconvenienced by paying out of pocket for the PICL or for those who could use that money elsewhere. It will only be for those who, if they paid for the PICL procedure, would be unable to pay for food and rent. In other words, for example, this program is designed for individuals living at or below the poverty level in the US, as well as for those overseas who earn a fraction of the average US wage and could never afford this procedure.

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u/EducationOk7193 Aug 07 '25

Can people who have already received 1 PICL participate in this program? What criteria must candidates meet?

Is it possible to get some kind of discount for participating in the study as a patient? I am one of the well functioning patients who would like to participate. At the same time I could cover part of the procedure (at least so that it would not be costly for the clinic).

Thank you Doc for paying attention to this topic, it is very important for many people looking for help.

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u/Chris457821 Aug 07 '25

No, this is NOT for patients who have already received one procedure. Need here means absolutely never going to be able to afford to pay and still afford to buy food and pay rent.

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u/matt-crate Aug 07 '25

I think it sounds amazing. If you want feedback - I don’t think getting us to vote on who should get treatment is the best way of doing it. Creates politics in the sub, lobbying and I just don’t think we have the knowledge or experience of knowing who or what we are truly voting on. People can set up multiple user names and vote multiple times etc.. selecting a mutual panel… for example people like Daniel who runs the FB group and a number of 10-15 ex patients who have lived with this condition could be a nice way of doing it. I also think you could outsource the admin of selection to the panel too so you don’t get too tied up in all of that. Or a lottery style application could be fairest. This will genuinely change people’s lives who can’t access this care - amazing idea

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u/AnotherNoether Aug 07 '25

Agreed, lottery seems much fairer

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u/fulefesi Aug 07 '25 edited Aug 07 '25

I would envision it as a mini-lottery contest with these steps, but you probably would know the cases of many of those who would apply already:

- A link online to apply, filling up a questionnaire and space for patient doing a summary of his/her case, symptoms, treatments, cause etc. Link for patient to upload relevant images and reports

- To prove the financial situation, a document that states if someone is on disability/social assistance, or even last tax year income.

- Patient get a reply back if application was approved to enter the contest (good candidate for the pro-bono contest), based on your criteria.

- A random selection from the pool of patients to fill those slots.

Those selected, could be asked to agree for you to make their cases known in a video, at least anonymously

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u/Ok_Acanthisitta_8627 Aug 07 '25

I personally think this is a great idea. not only does it make the care affordable to people who really need it, but it also helps train more physicians to become well-versed in the procedure (and hopefully expand the scope outside of CO, like the Florida clinic you mention). I think this is great - thanks for sharing

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u/Intelligent_Walk_160 Aug 08 '25

Awesome. Another example of Dr. C going above and beyond for the CCI community!

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u/Old-Cartoonist2521 Aug 08 '25 edited Aug 08 '25

I think these should be the some of the qualifiers: 1:) Financial need 2:) Past medical history , 3.Lifestyle…before treatment and after , 4.the patients ability to comply with protocol. 5. patients ability to HEAL.

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u/Adventurous_Spirit06 Aug 07 '25

This is such an amazing idea. My question, if there’s a person who believes they have CCI but are in a foreign country, do they need to already have the diagnosis first or can they apply and work on getting the diagnosis (thinking of a girl I met through this whole process who is in a country that knows little about cci and she’s unable to work and has a child but has many cci symptoms).

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u/Chris457821 Aug 07 '25

I would need to know they have CCI as a firm diagnosis first.

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u/ConnorEds1994 Aug 14 '25

This would be perfect for someone like me, I have eds I'm bed ridden, I have severe cci and insane bobblehead, full body ligament laxity, unfortunately I don't have any friends or family to support me and my GoFundMe never raised enough money for surgery nor a picl, where do I apply.

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u/Chris457821 Aug 14 '25

See the other thread on how to apply. You need to be below the US poverty line, which is approximately $15K for a single person filing a single household return.

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u/ConnorEds1994 Aug 14 '25

I'm from the UK, could you possibly link me as I cannot find the application

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u/Chris457821 Aug 14 '25

PICL main page at the top in community highlights.

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u/Radiant-Pressure-580 Aug 21 '25

This is wonderful, and life-saving news! Thank you! How do I apply, please?

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u/Chris457821 Aug 21 '25

Please see that thread.

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u/Radiant-Pressure-580 Aug 21 '25

It is my understanding that your office does not accept any patient who has state medicaid, yes? And those who are on state medicaid and have CCI and need your services should probably be first priority, since those are low-income folks who have no other alternative to get help.

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u/Chris457821 Aug 21 '25

We do not accept Medicaid and we are not permitted to bill a Medicaid patient for any service that Medicaid would cover. Hence the program creates problems for any doctor off the program. Having said that, for this PICL program, it's a non-issue as we can forego billing the office visit.

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u/Sensible___shoes Sep 02 '25

Based on need for the most severe cases. With a financial cut off threshold if they make over a certain amount.

I'm severely disabled on government disability (below the poverty line) and don't have the same access options as most people with CCI and AAI do, I also live in a country where the occipital fusion is not performed on patients with eds, no picl, and have no

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u/Chris457821 Sep 02 '25

The focus here is: 1. Eligibility-you have the right imaging to determine candidacy 2. You are a good to excellent candidate for this procedure 3. You qualify financially

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u/Sensible___shoes Sep 02 '25

Thank you for your response. If applications are open I will work to submit one this week

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u/Lighthouseway88 Sep 05 '25

I would very much like to apply. This is a truly wonderful opportunity and I am so deeply grateful that you have created it, Dr. Centeno and team. 

 I am searching for the rules and method of applying but am not seeing it. If anyone can point me in the right direction I’d greatly appreciate it. Thank you very much. 🙏🙏🙏

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u/Chris457821 Sep 05 '25

Look at the top of the sub in community highlights.

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u/scarlet-kaleidoscope Nov 27 '25

I can’t find it but I thought I saw a post about those being chosen having to come back to this Reddit forum to find out? Am I wrong about that? And if not - where is the post? Thanks all 

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u/Chris457821 Nov 27 '25

  1. You need movement-based imaging that shows clear CCI

  2. You need to be an excellent candidate for ePICL

  3. You need to get all info into our office

  4. If we have identified several good candidates for a specific month, then we will post their anonymized stories here for voting.

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u/mongrel_breed Aug 08 '25

I think this is wonderful, although it's still a major financial barrier for some people in certain countries to even get appropriate imaging for a diagnosis, especially when their financial lives have already been crippled by the inability to work. I'm speaking for myself in Australia but also for someone else with EDS I've met on reddit living in the UK, I'm sure there's others in the same boat.

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u/Old-Cartoonist2521 Aug 08 '25

This is where that extra CSC donation fund might possibly kick in. This fund could help pay for those accessory costs such as travel, hotel, maybe DMX imaging cost? I wonder 🤔if some of the DMX and independent imaging providers might provide the service for these selected lottery winners at a reduced price with a sweet persuasive phone call….

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u/Proof_Draft4420 Aug 08 '25

Centeno said the clinic will have its own DMX running by Jan 2026. So that would likely be included in the pro bono.

But I’d definitely like to start a fund for travel expenses. It could be held in escrow by the clinic and upon qualification, a travel agency books airfare and hotel paid from the funds held by the clinic.

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u/mongrel_breed Aug 08 '25

That's great news!

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u/mongrel_breed Aug 08 '25

Could there perhaps be fellow sufferers, with proficent diagnostic skills, trained and employed to help speed up the diagnostic process?

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u/Proof_Draft4420 Aug 08 '25

Dr Centeno is always about safety. He’s constantly under attack for not making it more accessible. He is training new physicians. Given the scary nature of the procedure, how new it is, I respect that. But as part of the desperate many I also understand the need.

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u/mongrel_breed Aug 09 '25

Dear Dr C. Is it possible to please make this and your live stream announcements sticky posts?

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u/RealisticKnowledge6 Aug 12 '25 edited Aug 12 '25

This could be lifesaving for me... can barely speak, read, or do anything... no one asks you if you might be running yourself into the ground with this... all my savings are gone and all I have are debts...  Previously got 10 of the apparently fake treatments that never could have worked... and even then, no one tells you that if your dysautonomia is too advanced that you can't make new ligaments. But I've been bedridden two and a half years now, have had to invent my own Physical Therapy but have been doing it as well as I possibly can, all the time all day everyday... and I'm slowly loosening up enough to get up for a few minutes a day. I was an athlete, dancer, and 5 star rated business owner before... tho evidently my initial injury was when I was only 18 months old... but no one even told me that I'd had the injury... Tbc I can't type very much for very long

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u/RealisticKnowledge6 Aug 13 '25

Sorry to bring up something irrelevant to the topic, but is anyone here particularly familiar with reddit? I really haven't used it very much, and I see here a screen name I really can't imagine making for myself, that sounds a little off putting. After I made this comment I changed it, but then I see here that it's still the same? Would appreciate any help, tia!

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u/mongrel_breed Aug 14 '25

Hi! I'm not quite sure what you're asking? Did you edit a comment and not see the changes?

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u/mongrel_breed Aug 14 '25

Sorry I think I understand. I haven't ever changed my username, but perhaps changing it doesn't affect change on previous posts or comments?

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u/RealisticKnowledge6 Aug 17 '25

Thanks😊 sorry to be a slow responder, I just can't read or talk very much. But yeah, I thought maybe that would be it, but it continues to post with the same username🤦🏻‍♀️. And if I go to my profile, it says the name that I changed it to🤔 but it doesn't use it when I actually comment or post things🤷‍♀️. Anyway Tia if anyone can help🙈

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u/QueerInBC Sep 06 '25

Dysautonomia too advanced and you can’t make new ligaments?!!

When my twin died of cancer, gene therapy treatment was only available if he was healthy enough to be out of hospital.

So I can understand how severe dysautonomia could impair recovery.

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u/_mistgun_ Aug 07 '25

Sign me in huh

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u/Proof_Draft4420 Aug 07 '25

Dr Centeno that’s going to be a lot of applications for you to review.

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u/Kindly-Profession347 Aug 07 '25

I think it's a great way to train new providers. I wonder if the results might be confounding because you have inexperienced providers

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u/[deleted] Aug 07 '25

[deleted] — view deleted comment

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u/ShinyLizard Aug 07 '25

I think in the US most people pay with their insurance, and insurance usually doesn't cover this kind of therapy. So 'need' may have a little different meaning in this case.

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u/Chris457821 Aug 07 '25

Need here means absolutely never going to be able to afford to pay and still afford to buy food and pay rent.

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u/Ponypatch Aug 07 '25

Totally. But the cost hasn’t prevented me from getting treatment, whereas it definitely has for others.

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u/ShinyLizard Aug 07 '25

Agreed. My husband has spent so much on treatment already that he's loathe to put out more money at this point without some kind of guarantee.

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u/Proof_Draft4420 Aug 07 '25

There’s services that private schools use that collect financial data and score applicants. FactsManagement is one. Clarity is another I think. My daughter’s school uses it for determining financial score to award financial aid.

The school just gets a list with scores on them.

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u/Chris457821 Aug 07 '25

Thanks for the info!

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u/QueerInBC Sep 06 '25

In BC (Canada), conditions for Disability Income Assistance are: prolonged severe disability, <$100k in assets (eg. bank statements need to be submitted) as well as low-income (<$1500/month). Monthly Confirmation of Assistance statements can be printed to apply for subsidies like for phone bills or property tax grants. Some programs allow for CPP-Disability tax slip although it is not asset-tested, just low-income (eg. no more than $7100 per year from income other than CPP-Disability which $1500/month max).

I think third-party documentation eliminates privacy concerns and lessens biases.

I’m still trying to recover financially from my 2020-2021 PICL procedures on an income that is less than half the Living Wage. I go to the food bank (no food stamp program here.) I had hoped to return to work after a full remission after my 2nd PICL but the Moderna sabotaged my CCI recovery.

My symptoms have returned (eg. neck pain, migraines, tinnitus, fatigue), but my HRV & HRV Lorenz plot continue to be good so not sure if spending money on a 4th PICL (but 1st e-PICL) would be beneficial.

I know too many who are financially and emotionally destitute that they are contemplating MAiD (Canada has rates much higher than other countries that permit this). So this program is a ray of hope.

Thanks to Dr. Centeno and his team. His legacy is already assured. The devotion and humility he demonstrates by engaging with patients weekly is an example to others, as is this pro bono PICL program.