Blind and Visually Impaired Community
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Any free research trials or experimental drugs for USA/NJ retinitis pigmentosa when unemployed and uninsured? (self.Blind)
submitted by 41aErnie
Posting for someone who is now just about fully blind. Has lost their job, has no insurance, and giving up all hope. Can't get tested because he has no money and can't get insurance because he has no job. Is legally blind and has nothing he can do.
DrillInstructorJan 2 points 2y ago
This is unsolicited and free advice which may be worth what you're paying for it, but anyway.
This sounds a lot like someone is desperately searching for a cure which I totally get, I've been there, I know. But the best solution for the way he's feeling right now is probably not a cure, because there probably isn't one. I mean, I'm not a doctor, but I would strongly recommend not burning through loads of cash in a desperate attempt to fix it, because believe me, being blind is expensive and you will need that cash.
Probably what he'll say in response is that he wants to wait until he's somehow feeling a bit better and more at terms with the situation. Unfortunately that doesn't just happen and you have to work for it. If you wait, you will just wait and wait, and be in the same situation in several years time. The only way to change that is achievement and to learn how to do stuff. I describe it as being like a degree level course and it takes about as long, but once you have figured out the basics your ability grows and grows. Then, and only then, do you start thinking, okay, I can hack this. It's never going to be great, it's never going to be lovely, I don't love it, but I can do it, and that fixes the awful feelings your friend is probably now having.
Everyone here will help with this but right now, trying to find ways to fund miracle cures is probably not the sanest priority.
This sounds a lot like someone is desperately searching for a cure which I totally get, I've been there, I know. But the best solution for the way he's feeling right now is probably not a cure, because there probably isn't one. I mean, I'm not a doctor, but I would strongly recommend not burning through loads of cash in a desperate attempt to fix it, because believe me, being blind is expensive and you will need that cash.
Probably what he'll say in response is that he wants to wait until he's somehow feeling a bit better and more at terms with the situation. Unfortunately that doesn't just happen and you have to work for it. If you wait, you will just wait and wait, and be in the same situation in several years time. The only way to change that is achievement and to learn how to do stuff. I describe it as being like a degree level course and it takes about as long, but once you have figured out the basics your ability grows and grows. Then, and only then, do you start thinking, okay, I can hack this. It's never going to be great, it's never going to be lovely, I don't love it, but I can do it, and that fixes the awful feelings your friend is probably now having.
Everyone here will help with this but right now, trying to find ways to fund miracle cures is probably not the sanest priority.
mammaube 1 points 2y ago
Hey I just saw this post. Where in NJ? I live in NJ and have RP. I have medicaid thru the state. And I'm on SSI. You can message me if you want to talk. I could probably help out here.
41aErnie [OP] 1 points 2y ago
I mean he is on unemployment
41aErnie [OP] 1 points 2y ago
He is in Warren county. Right now he says he needs to finish his final disability payments before going on SSI. People are saying here that SSI disability is different than normal SSI and he won't need to drain all his bank accounts first?
macadamia_owl 1 points 2y ago
The only safe place to search for such ones is
$1
I myself was invited for Phase 2 & 3 trial for other illness. It's not easy to be classified, you have to meet rigorous requirements and study can end for any reason. You can end up in placebo group too if it's Phase 2. Idk how it's now due COVID many studies are stopped or canceled because of it :( mine too it's for health reasons, safety and to be sure that results will be not biased.
$1
I myself was invited for Phase 2 & 3 trial for other illness. It's not easy to be classified, you have to meet rigorous requirements and study can end for any reason. You can end up in placebo group too if it's Phase 2. Idk how it's now due COVID many studies are stopped or canceled because of it :( mine too it's for health reasons, safety and to be sure that results will be not biased.
Revenant624 1 points 2y ago
Has your friend ever worked? If so how long? The reason I’m asking is because if he has a long work history then he could apply for Social Security disability. If not, he would have to apply for Social Security. That would also include Medicare, but once approved it takes like six months for the payments to kick in. Have your friend contact New Jersey commission of the blind and have them open a case for him. Also have him ask about the BENJ program .
41aErnie [OP] 1 points 2y ago
He has a long work history as a family lawyer. Laid off when they closed the office for corona. They opened back up and rehired everyone but him.
Revenant624 1 points 2y ago
Not sure if this would help, but Google blind lawyer from Paramus. I remember reading a story about a guy who played baseball and lost his site and became a lawyer. I believe he has offices in Paramus who knows maybe he can apply for a job there. Also, how is your friends mobility? If he has issues getting around he may need mobility training before even attempting to get a new job. I personally hate the cane and got myself a seeing eye dog. It has changed my life for the better having him.
DrillInstructorJan 1 points 2y ago
Is that even legal? He should know!
Law is one of the standard careers for people with sight problems, it's completely doable. If he's a qualified lawyer he should be pushing to get back into it.
Law is one of the standard careers for people with sight problems, it's completely doable. If he's a qualified lawyer he should be pushing to get back into it.
oldfogey12345 1 points 2y ago
It takes a while to get on Social security though. Should start that process now.
Also look into the ACA (Obamacare) if they need insurance in the mean time.
Starting on experimental things isn't really doing them many favors when they have no source of income at the moment.
Also look into the ACA (Obamacare) if they need insurance in the mean time.
Starting on experimental things isn't really doing them many favors when they have no source of income at the moment.
41aErnie [OP] 1 points 2y ago
I figured with the experiments they would need people to test stuff on and could use his body as a trial case. He would subject himself to whatever.
Revenant624 1 points 2y ago
I have RP as well and I don’t know of any research going on. Then again, I honestly haven’t looked either.
oldfogey12345 1 points 2y ago
Well, it depends on his safety net really.
A lot of those need lots of follow up appointment and/or other face to face interaction for testing purposes.
Can he reliably get to the testing places? Uber is going to be difficult for someone with no income, and learning the public transit system when you just went blind is a real pain.
Maybe he lives in a stable place now and don't have to worry about being homeless, maybe he can live with family.
If not, those experimental treatments are going to be hard to juggle along with trying to keep a roof over your head with no job.
If he has people to take care of him financially till he can get on SS or whatever, then he only needs to wordy about transportation.
Otherwise, there is a whole bunch of other things he will need to do to stabilize himself before adding on experimental treatments.
A lot of those need lots of follow up appointment and/or other face to face interaction for testing purposes.
Can he reliably get to the testing places? Uber is going to be difficult for someone with no income, and learning the public transit system when you just went blind is a real pain.
Maybe he lives in a stable place now and don't have to worry about being homeless, maybe he can live with family.
If not, those experimental treatments are going to be hard to juggle along with trying to keep a roof over your head with no job.
If he has people to take care of him financially till he can get on SS or whatever, then he only needs to wordy about transportation.
Otherwise, there is a whole bunch of other things he will need to do to stabilize himself before adding on experimental treatments.
urethanerush 1 points 2y ago
I don't have have extensive experience in this area but your friend should be able to get insurance due to his disability - in particular medicare or medicaid, they should also be eligible for social security disability benefits to help them get by. I would also get in contact with the Lighthouse Guild in Manhattan as they will have extensive experience in this area.
When it comes to research trials, they should not require payment from people taking part, rather it is far more likely they will pay for his time. There are a variety of ophthalmology research labs in NYC, including NYU Langone Health who would be interested to hear from him.
When it comes to research trials, they should not require payment from people taking part, rather it is far more likely they will pay for his time. There are a variety of ophthalmology research labs in NYC, including NYU Langone Health who would be interested to hear from him.
41aErnie [OP] 1 points 2y ago
Hi, do you know more about the lighthouse guild and the NYU langhorn? Looking on the pages now. Should I contact them to say I have this person who needs help?
Social security and Medicaid, he says he needs to spend all his life savings first I think, they don't let people who have some reserves get it so he has to fully burn through his cash and then once he is penniless he can get government aid.
Social security and Medicaid, he says he needs to spend all his life savings first I think, they don't let people who have some reserves get it so he has to fully burn through his cash and then once he is penniless he can get government aid.
Revenant624 1 points 2y ago
I think that is for Social Security and not Social Security disability. It seems your friend had a long work history and if that’s the case he should qualify for Social Security disability. Once qualified it takes six months for the payments to kic in. Your friend would probably have to use his savings until his payments start
urethanerush 1 points 2y ago
Hello, yes I think that would be a good starting point with talking to the Lighthouse Guild, they should be able to provide clearer guidance than myself on the next steps. It may be true about the limitations if he has secure finances, there are two aspects and he may be eligible for one - either social security disability benefits or Supplemental Security Income. It may be the case that he can get private health insurance on the ACA exchanges, if the medicare / medicaid angle does not work out. Either way, I think your progression should be the same, talk to the Lighthouse Guild, and then the Social Security Administration about potential benefits available to him (if he hasn't done so already).
To finish up my points with regards to research trials and no insurance, it may differ according to which University, but I don't believe subjects necessarily have to have insurance. There is usually a part of the consent form which talks about who is responsible for covering serious medical side effects from experimental trials - and this will usually be the University.
To finish up my points with regards to research trials and no insurance, it may differ according to which University, but I don't believe subjects necessarily have to have insurance. There is usually a part of the consent form which talks about who is responsible for covering serious medical side effects from experimental trials - and this will usually be the University.
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