I received Jennifer's message yesterday afternoon and spoke with our respiratory therapist who confirmed that the vest companies are not able to send equipment until the patient has valid health insurance.

I have left a message with the financial counselor at the hospital to try and find out the status of the Medicaid application. Unfortunately, I have no connections at either Medicaid or PeachCare. I know that Medicaid applications take approximately 45 days to approve, and I would imagine that PeachCare is about the same.

In the meantime, CPT (chest percussive therapy) is a perfectly acceptable alternative to the vest. Angela, our respiratory tech, taught Jennifer the procedure while Jaden was in the hospital but would be happy to go over it with you guys again. Would you mind sharing this information with Jennifer?

If you already know this, my apologies; but perhaps other readers could use this information.

Medicaid is a state run program in every state with a federal "subsidy"(getting back some federal tax dollars you may have sent in yourself). As states (all states) start going bonkers in budget crises, M'aid program (sometimes administered through county agency - health department/family assistance etc) will likely be a consideration (target).

List of State services

You might like to take this opportunity to introduce yourself to your state Representatives/Senator Find representative. You have 3.

a) You may want to let them know you need the assistance and would like to contact him, her, them, if the state balks at your submitted claims.

b) This would be a great opportunity regardless, to introduce him, her, them to cystic fibrosis in general Ga. new born screening and Jaden in particular. Go to the representative's/senator's office or invite them to your home, church, social or community group for a chat. You can start with using email (giving some written history of your need in advance) then make a phone call if no response.

c) you may be able to head up a movement to have cf listed as a catastrophic illness and have special "state protection" from financial hardship.

Just some thoughts.
Peter

Dear Senators,

I am writing you in regards to my 2 yr old grandson (please see attached). On 3/1/10 my 21 yr old daughter filed for Peach Care, 10 days prior to finding out that Jaden has the deadly disease Cystic Fibrosis. (and not only does he have Cystic Fibrosis but he has THREE mutations, which is extremely rare, they only know of one other case and that is in Croatia.)

On 4/20/10 we were informed by Peach Care they have kicked his file over to Medicaid. It is now May 4, 2010 and we have yet to hear a word. Jaden was in the hospital from 3/7-3/31/10. Since that time he has yet to get the life saving treatment and medication he needs to have a productive life. He needs his CF Vest ($16,000.00) and Pulmozyme (that is so expensive the CF team won't even tell us yet). In the mean time he has to take enzymes with every meal because his pancreas does not work. ($100.00 for 50). His vitamins are $1300.00 per month but the CF Foundation has helped with these.

I guess I am reaching out to find out if you can help us. My daughter and Jaden live with my husband and I in Smyrna and are trying to do the best we can to get everything Jaden needs. There is even a CF Walk at GA Tech 5/15/10 I urge you to attend to find out more about Cystic Fibrosis Great Strides Event and even consider state protection from financial hardship for people with Cystic Fibrosis. Thank you for your time and have a great day.

Sincerely

Jesse: Would you please check into the case below for Mrs. B and her grandson Jaden to see if there is anyway to speed up the process so that Jaden can receive the care he needs? Also, any other suggestions on where they can find assistance would be greatly appreciated.

Thank you for all you do,

Laurie Sparks for Senators Don Thomas, Steve Thompson, Horacena Tate, Doug Stoner and Nan Orrock

UPDATE: Found out PeachCare NEVER submitted application. We have just faxed it over to Medicaid who is hoping to get it through by the end of the week. Let us pray!

Breathe Easy Jaden help is a coming!

Peter's response:
Good job. Great letter, obviously. Nevertheless, their timely graciousness aside, you still have a wonderful opportunity to have "Senators Don Thomas, Steve Thompson, Horacena Tate, Doug Stoner and Nan Orrock" do as you suggested:

attend "CF Walk at GA Tech 5/15/10 I urge you to attend to find out more about Cystic Fibrosis Great Strides Event and even consider state protection from financial hardship for people with Cystic Fibrosis".

You may even ask (through Laurie Sparks - apparently a shared legislative aide) if this is the first they have heard of cf. If so, be a little more cajoling and pressing to get them to the event or "campaign" with a cf oriented group. You got the most important response you were seeking but let's be honest; they need to make contact with cf TOO!!!

BTW if they have a public blog or feed back column, post a public thank you and for sure send a personal note to them for such immediate response to Jaden's (not your) needs.

I don't know if you are a Christian, but the expression "you may be the only Christian they will meet" could be applied here by substituting "cf stakeholder" for Christian.

I'm so happy for you/Jaden.
Peter

Dear Senator,
I want to thank you for your prompt and extremely efficient assistance in helping little Jaden with his CF situation.

You have given much hope and relieved much stress to Jaden's immediate family.

Again, my sincere thanks.
Sincerely,
Larry - friend of Jaden, Jen and Carol

Don,
I just want to thank you so much for helping my friend and co-worker, Carol, to get her grandson, Jaden onto Medicaid. She has been through so much in past month since finding out Jaden has cystic fibrosis and yesterday when she got the good news, she had tears of joy. You make a difference.

Thanks,
Nancy, MS, CRC, CCM