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Forum -> Children's Health

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amother

Wed, Jul 10 2019, 10:58 am

I don’t know all the details
It is someone in my community
There is an almost 2 yr old girl that has a syndrome that has to do with her mobility
The drs diagnosed her FINALLY about 2 months ago
The dr claims that if she gets a certain medication injection before she is 2 yrs old that it is possible to stop the progression of this syndrome.
The medication costs in the millions
Medicaid has refused 2x
They’ve been fighting with Medicaid since the diagnosis 2 months ago.
She will be turning 2 in 12 days.

I know there was a case in Texas of a boy needing a certain medication and insurance denying it.

If any one knows of lawyers or organization that deals with this situation please let me know.
We don’t have a lot of time

ra_mom

Wed, Jul 10 2019, 11:08 am

Call Chai Lifeline. Also RCCS has experience finding the right insurance plan that covers certain things. I know that's usually for cancer but maybe they can help?

littleprincess

Wed, Jul 10 2019, 11:09 am

Try Refua helpline . They have a lot of connections

amother

Wed, Jul 10 2019, 11:21 am

We’ve tried Refuah and Chai Lifeline
This is not cancer

amother

Chartreuse

Wed, Jul 10 2019, 12:05 pm

Some pharmaceutical companies has programs where they will provide if financial need is proven. We had that recently with a vaccine for my baby from astra zeneca.
Refuah shelaima and hatzlocha!!

amother

Wed, Jul 10 2019, 12:30 pm

amother [ Chartreuse ] wrote:

Some pharmaceutical companies has programs where they will provide if financial need is proven. We had that recently with a vaccine for my baby from astra zeneca.
Refuah shelaima and hatzlocha!!

The injection is $2.1million

crust

Wed, Jul 10 2019, 12:32 pm

Advanced Advocacy
845 781 7325

amother

Wed, Jul 10 2019, 1:10 pm

crust wrote:

Advanced Advocacy
845 781 7325

Ok thanks that’s helpful

amother

Olive

Wed, Jul 10 2019, 3:00 pm

crust wrote:

Advanced Advocacy
845 781 7325

If they’re part of cll then they can speak to them as part of services offered.
Also, did they try rccs even though it’s not cancer? Rccs can s/t get a grant that may help & I would suggest you try ujo as well.

amother

Orchid

Wed, Jul 10 2019, 3:06 pm

if this disease or group of diseases has a foundation, they can try them. Otherwise they can try care for rare or nord.

amother

White

Wed, Jul 10 2019, 3:07 pm

Call your local television station and newspaper to publicize the issue.

amother

Fri, Jul 12 2019, 3:52 pm

A chesed fund was made for this little girl
Who do I contact to post on here

amother

Brown

Fri, Jul 12 2019, 3:56 pm

Chaim medical
845-492-8700

amother

Fri, Jul 12 2019, 4:00 pm

[quote="amother [ Brown ]"]Chaim medical
845-492-8700[/

Thanks for the info

How do I post chesed fund on here
Do I need permission

ra_mom

Fri, Jul 12 2019, 4:04 pm

amother [ OP ] wrote:

Thanks for the info

How do I post chesed fund on here
Do I need permission

PM Yael for permission.

happyone

Fri, Jul 12 2019, 4:44 pm

did you contact the NIH?? They have a team doing research on rare diseases and gene therapy etc. if you get approved and it sounds like it's a rare disease, all charges are covered including accomodations. if interested, I can get you the info to see if this is an area to explore.
insurance support services Aron Neustadt is excellent at fighting insurance companies if it's an approved drug. .8007924244

hatzlocha

flmommy

Fri, Jul 12 2019, 5:13 pm

I received a link via to donate on a chat I am on through whatsapp and donated. We should hear good news!

amother

Wheat

Fri, Jul 12 2019, 6:10 pm

According to the chessed fund, they need o raise 2.2 million for the drug by this coming Thursday, July 18. The FDA will not approve the injection after she turns 2. That means we have 6 days to raise the money.
Last I checked (about 30 minutes ago) they had raised 138, 000.

amother

Fri, Jul 12 2019, 7:01 pm

amother [ Wheat ] wrote:

Yes this is true
The family received the diagnosis 5 weeks ago
They have been battling with Medicaid ever since.
They need to pay it up front before the injection is released to the doctor
If the time passes 2 yrs and 1 day she loses the chance of getting the medication she desperately needs

On top of all that Medicaid was about to approve it and after waiting 5 days they pulled the rug from right under them

Please keep this little girl in mind when you light candles this Shabbat

happyone

Sat, Jul 13 2019, 10:27 pm

can they get another real insurance policy asap? easier to raise funds for premiums than for the drug. just a thought. I know its the 11th hour. getting the state involved and threatening to sue for loss of time may also help. really try this guy Aron Neusdat. he has helped us tremendously at the 11th hour with obtaining coverage .

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