CF care from Native American Reservation clinics?

[TravisRaymondWriting]

So my niece is Ojibwe and I am currently helping her and my brother navigate the means to bring her new options for treatment. Since money is tight for the family because of CF treatment I want to look into getting her into one of the Ojibwe clinics near me. However I cannot pinpoint what services are available, as I am not a patient they will not divulge such information. I am hoping someone here is Native and can weigh in on what health care treatment options are generally available through clinics. I know particulars will vary, but I am simply looking for some news to give my brother while we wait on more official word.

Thank you in advance!

 

[Imogene]

I hope this map helps our members see where your tribe is located. Love your Kahlil quote...I hope you find the right treatment for your niece....

 

[Ratatosk]

Not sure exactly where you're located. A friend of mine in Central Minnesota is part of the LCO in NW Wisconsin. I believe she knows of someone with CF in her area and they go to the U of MN in Minneapolis. Have you checked out the cystic fibrosis webpage cff.org for info on a care center near you?

 

[Aboveallislove]

I have close friends who are cherokee in ok. He is pretty high up in tribal governance. I have no idea if there is an overlap with tribal health care, but if you know and want I can see what he can tell me. But to clarify are you looking for meds covered? Equipmement? Types of dr? Costs? What specifically would you want to know?

 

[TravisRaymondWriting]

Thank you all for the wonderful and prompt responses!
Some added info for my situtation:

Currently the location is Western New York. We are Ojibwe (Chippewa) and they are looking to move onto the Salamanca Indian Reservation in Salamanca, NY.

What I am trying to find out is some specifics from anywhere there are Native populations with clinics to give me information on

1) What types of modern medical facilities are available to treat CF in Reservation Clinics.

2) Are there options of Traditional services available on Reservation Clinics? If so, what?

I know these answers will vary from tribe to tribe and reservation to reservation, but I am looking for any information. My brother is more than willing to move to another location governed by Tribal leaders if care would be provided for his daughter. Any/all benefits (meds, equipment, tests) are all being looked at. She was only just recently diagnosed (a newborn) and they currently live in Canada, although our Mom is from the aforementioned Salamanca Res.

The biggest reason we are seeking Native care locations is because we have both faced a great deal of continual racial bias when we have needed care off of Tribal Lands and do not wish for this to continue for his daughter/my niece.

Thank you all!

 

[cfgf28]

I know you are trying to stay with reservation DR's etc, BUT i have a feeling none of them will accredited or equiped to deal with CF. The best and closest place they could go would be Buffalo, NY Women's and Children's Hospital, it is an accredited clinic, and they have amazing Dr's some of whom have been very beneficial in research studies, they treat pediatric patients and Adults. They have social workers equipped to help with insurance issues, etc...

 

[Aboveallislove]

With the additional information you provided, I would suggest that you first call the Cystic Fibrosis Foundation and ask if there are any accredited CF Centers on reservations. I would guess there aren't, but I would first confirm. If there are and you want to stay on a reservation, that would be your best choice. If there are not, I really think you need to abandon the idea of having treatment at a reservation. They could serve for general peditric stuff, but to get proper CF care, they will need to go to an accreditted CF Center.

 

[Ratatosk]

My friend who is a member of the LCO in Hayward, Wisconsin knows of a couple people wcf. Not sure about local care... But maybe someone can answer your questions from there

 

[sabrina77]

I am a quarter Tlingit Indian (Alaska native) and I go to the Alaska native medical center which is IHS. I have a primary care doctor at the native hospital but she sends a referral for me to see a cystic fibrosis specialist. I have been approved to go the university of washington cystic fibrosis clinic 2 times a year. My primary care doctor works closely with the uw cf clinic to monitor and assess my medical needs. I have been hospitalized for a tune-up at the native hospital but the uw cf clinic prescribes and tells them what medicines I need. So basically the native hospital is a middle man for my treatments and prescriptions. I'm assuming all IHS hospitals have the same requirement to refer their patients to a specialty provider that is in the closest vicinity to your ihs hospital. I would have them talk to a ihs doctor about referrals to a specialty clinic or at least contacting a cf clinic to better understand the complex care of a cf patient. It is very rare for native Americans to have CF. I hope this helps, you can contact me if you have any questions for me.