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BBTRAN SparkPoints: (625)
Fitness Minutes: (2,959)
Posts: 19
9/27/12 8:55 P

Deb, I don't have any suggestions (other than what others have posted). I just wanted you to know that you & your husband are in my thoughts & prayers.

15LOVEHARRY SparkPoints: (17,112)
Fitness Minutes: (18,206)
Posts: 189
9/27/12 8:28 P

Deb, I know it can be tough. Sometimes just having an impartial person who can communicate your wants and needs can be helpful. I have a wonderful landlady and if I need any advice or help she is glad to step in and help. Sometimes it takes a few calls but it can be very helpful. emoticon one Day at a Time, this too shall pass.

PT.JEFFGIRL SparkPoints: (126,496)
Fitness Minutes: (123,417)
Posts: 5,262
9/27/12 5:31 P

Wow, Deb, my heart goes out to you. I do not have any suggestions. I am appalled to hear your situation and that under such circumstances, you receive no help. Yes, I said No because that is what it sounds like to me. I do hope that out of the thousands of people here on Spark, that you will get more help. I would think that medical chat rooms or medical sites must be available for situations such as yours. Good Luck. God Bless!

GINGERVISTA Posts: 5,857
9/27/12 5:13 P

I see the suggestions here that I was going to make: contact your Representative or Senator. I was on food stamps (yes, one of those 'victims'), but for some reason--no explanation, they deprived me of the $200/month for 2 1/2 months. Long story short, called my local Rep & the next thing I knew, there was 2 1/2 month's worth of food stamps, retroactive, something they NEVER do! Best wishes & lots of emoticon
So glad you've got a circle of support. emoticon

YOJULEZ SparkPoints: (15,605)
Fitness Minutes: (120)
Posts: 2,171
9/27/12 4:45 P

Does your husband receive his treatments at a hospital? If so, many hospitals have "charity care" programs, where they will assist with paying your bills if you cannot afford to. I utilized it when I had to have surgery after an accident in 2009, they reduced my bills by almost 75%, and let me do a payment plan for the rest, at an amount I set, with no interest. Also, there are other non-profit programs that help out folks in your situation with paying their bills.

A few years back my brother got sick due to the black mold in his house. He was allergic to it, and it landed him in the hospital for 2 weeks. He was unemployed and had no insurance. He ended up finding an organization that paid all of his hospital bills for him, this was in Oregon.

My guess is they stopped his Medicaid because his disability payments put him over the income threshold. I would also try talking to his doctors, to see what help they can offer.

It really is sad the state of the medical system in our country, I know I was shocked how much things cost when I had my surgery. My boyfriend has Crohn's and has to receive a very expensive IV treatment (Remicade) every 6 weeks. It costs around $8,000 each time. Thankfully he has insurance through his job and they pay most of it and he found a rebate company for Remicade that helps him with the remainder of the costs. But, if he lost his job and insurance, we wouldn't be able to afford his treatment, and he would just have to suffer. Very sad.

Also, I did some googling and came across this: http://www.celgenepatientsupport.com/free_
medication_program.aspx

Celgene is the company that makes Vidaza, so perhaps this program can offer you some assistance in paying for the treatments.

WHOVIAN85 Posts: 861
9/27/12 1:43 P

change.org is a free site to start petitions, you can share them on facebook and lots of people can help you sign your petition too. here is the link, www.change.org/ prayers and positive thoughts your way. I'll be the first to sign it and share it on my page too. I too have a sick husband whose immune system is compromised. Hope this helps some.

DMJAKES Posts: 1,605
9/27/12 1:21 P

Deb - all federal programs have an advocate or appeals process that you can turn to when you feel a decision is unfair or that more information needs to be considered. Look through the letter of determination or other paperwork you received that told you he wasn't eligible for Medicaid. There should be information in there somewhere about how to start the appeals process. Do NOT take one "no" as the final answer. It may even be worth your while to see if there are any legal aid agencies in your area that might provide you with free or low cost legal counsel to help you with this fight.

I would also recommend contacting every local and state agency you can think of and ask about any help they may have available (everything from food to utilty assistance to help with fighting with the Medicaid folks). Catholic Charities is big here in St. Louis but I'm sure there are a LOT of others.

There is help out there....you have to be willing to keep asking and calling until you get to the right place!

DEB912 Posts: 59
9/27/12 12:40 P

THANK YOU.

DEB912 Posts: 59
9/27/12 12:39 P

THANK YOU I HAD NO IDER WHERE TO CALL BUT I WILL THEM A CAKK TO FIND OUT WHAT I CAN DO ABOUT THIS AND TRY MY BEST TO FIGHT IT. emoticon

LOSTLIME SparkPoints: (74,331)
Fitness Minutes: (21,430)
Posts: 19,221
9/27/12 8:40 A

I don't have any advice for you. I wish that I did. My husband has gone through 3 surgeries for
bladder cancer in the last 6 months. He has no bladder or prostate anymore. He wears an
ostomy bag. He is retired Navy and goes through military facilities for his procedures. If he didn't have that, there is no way we could afford it. With just testing,meds and doctor's visits we are strapped for money. I have been out of work for the last 2 years. As it stands right now,
I can't go back to work because who is going to hire me when I have to take him to the
hospital or the doctor at the last minute. Our children live at least 2 or 3 hours away and it is
not feasible for them to help out. Also his recovery is very,very slow. He has nerve damage in
his right leg from the surgery. He has to walk with a cane. Sometimes he has to use a walker
when his leg is really sore. Some of his meds that he takes,he can't drive. So I have to drive him to and from work. We are also scared that his job is going to fire him because of his medical problems. If that happens,we are really screwed.

I am going to keep you in my prayers and thoughts. I sincerely hope that everything turns around for you and your husband. I wish that I had some sort of miracle advice to give you.
I can only say to stay strong. The Lord is watching over you both!

FITMOM1969 SparkPoints: (2,206)
Fitness Minutes: (717)
Posts: 309
9/27/12 1:12 A

Hospital Ombudsman is an advocate for patients, legal aide and the advice you were given to call legal board in your area sounds great. Best of care to you and your husband emoticon

FENWAYGIRL18 Posts: 5,855
9/27/12 1:02 A

God Bless you and your hubby, you should call your senator or congressman and see if they can help you somehow... I'm not even sure what to say to you I just feel so bad for you and your situation... emoticon

JCHERNILA SparkPoints: (1,273)
Fitness Minutes: (190)
Posts: 35
9/27/12 12:53 A

Every state, and most larger towns/cities, have a hotline operated by their Bar Association. If you have not yet contacted yours, you might want to consider doing so. I have a brother who is differently abled and whenever his benefits are cut I call in to make sure the agencies are legally able to do so, and I make a point of asking if there are any alternative agencies/facilities that can close the gap. You should also look into what the Americans with Disabilities Act says about your situation - again your local Bar Association should be very helpful.

Good luck and God bless you and your husband. You are both in my prayers.

DEB912 Posts: 59
9/27/12 12:29 A


Thursday, September 27, 2012
FIRST OF ALL LET ME TELL EVEYONE THIS IS GOING TO BE A LONG CONVERSATION.
I HAVE A PROBLEM AS SOME OF YOU KNOW MY HUSBAND HAS LEUKEMIA AND MSD WHICHIS MYELOIDEPLASTIS SYNDROME WHICH IS ALSO BLOOD CANCER THAT CAUSED THE LEUKEMIA.
ANYWAY, HE WAS DIAGNOSED BACK IN JANUARY WITH THESE 2 CANCERS. WE WERE TOLD BY HIS CANCER DOCTOR AND EMORY HOSPITAL HE COULD NOT WORK ANY LONGER BECAUSE HE HAS ALMOST NO IMMUNE SYSTEM LEFT. SO WE WENT AND APPLIED FOR DISABILITY FOR HIM. WELL I AM DISABLED AND I RECEIVE DISABILITY AND BECAUSE I RECEIVE A LOUSY $1050 A MONTH THEY GAVE HIM $17.00 A MONTH ON SSI AND MEDICAID FOR 6 MONTHS OH YEAH, NOW AND $200 IN FOODSTAMPS FOR THE 2 OF US. IT WAS HARD BUT WE MADE IT THROUGH THE 6 MONTHS WITH THE HELP FROM GOD, CHURCH, FAMILY, FRIENDS AND HAVING FUND RAISERS.

BUT, NOW THEY HAVE STARTED HIS DISABILITY CHECK ABOUT $1400.00 A MONTH BUT STOPPED HIS MEDICAID AND SAID IT WILL 2 YEARS BEFORE HE CAN GET ON MEDICARE. HE HAS TO TAKE CHEMO THAT IS CALLED VIDAZA WHICH IS 2 SHOTS FOR 7 DAYS A MONTH.
AND EACH SHOT COST $749.00 EACH THAT IS OVER $1500.00 A DAY FOR 7 DAYS EACH MONTH WE HAVE TO COME WITH NOW. THATS NOT INCLUDING THE GOING TO THE DOCTOR FOR HIS BLOOD TEST, BLLOD TRANSFUSIONS WHEN HE NEEDS THEM, HIS MEDS, OR GOD FORBIDS HE GETS SICK AND GOES IN THE HOSPITAL. I JUST DO NOT UNDERSTAND HOW THEY CAN STOP INSURANCE ON A PERSON WILL DIE WITH OUT TREATMENT. WHAT HAS THIS WORLD COME TO?

WE SEND MONEY ALL OVER THE WORLD AND WE CANNOT TAKE CARE OF OWN PEOPLE AND HELP OUR SICK PEOPLE HERE. I AM WRITING TO EVERYONE I KNOW EVERY CONGRESSMAN, GOVENOR, LT. GOVENOR AND ALL THEIR STAFF, THERE IS NO TELLING WHO ALL WILL HEAR FROM ME. DOES ANYONE KNOW HOW TO LEAGALLY START A PETITION TO GET PEOPLE TO SIGH THAT MAY HELP?

i AM UP FOR ANY IDEAS?

emoticon

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