I been denied from my insurnce to pay for cincinnati visit,now I already have a bunch of appointment with different Dr in less then a week from now(neurology,heart,lung,nutritionist,,,) I 'm not be able to pay for all those Drs I have to choose.The most important is for me to see Dr WONG,the rest I have to wait till I go again to chop,or what?for people who went to cinc please share with me your thoughts.
Thank you,

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I would just see Dr. Wong. That will cost around $500 or $600 - if MDA doesn't pick it up. That may be even cheaper if you can get all your labs and tests she will want done locally. Find out what tests she wants and have your pediatrician order them before you go. I don't know if that is even possible to get done in a week. The bloodwork should be but probably not possible to get a DEXA scan scheduled that fast. The DEXA has to be sent to her on disk so she can read it herself.

I totaled it up once and with all the other specialists and the tests it runs around $6000 - $8000.

Have you looked into any state resources? My state has Children's Special Health Care Services and they will pay for a one time 2nd opinion anywhere with any doctor.

Karen
I just noticed your in Jersey. Won't that catastrophic fund your state has help? There's a lot of folks from NJ on here. They'd be able to give you more advice than I on that than I.
Call and talk yo the clinical coordinator and she may be able to help you get in touch with the social worker. Also, make sure to tell them your insurance isn't covering it and they will probably give you a discount. I hope this helps.

Jess
Hook up with your local MDA services coordinator. Ours in MI knows all, and if she doesn't she finds out for you. We also have Childrens Special Health Care Services in MI. We pay a premium every month, but the state pays for all of the specialist care, after the primary insurance. Find out what is available in your state. Good luck.
Jennifer,
Just so you know, CSHCS in MI will only pay for specialists here in MI. I just went to battle over it with them to get help for everything that is not covered under my insurance when we go to Cinc and they would not budge. They said that my son could recieve the same care here. I completely disagree. I agree though, Djamel should check into his states help. Every state program is different and called something different.
Just curious, what MDA service coordinator are you dealing with? You can send me a PM on that if you like.

Thanks,
Karen
From the insurance still no answer,I'm not gonna worry about it too much,I'm looking forward to meet with cinc Drs,anyway an association at n.wildwood,nj organized a beef & beer for my son where it ends very good,with that money I can pay for the Drs if the inssurance don't picked the bill.I'm not going to give up yet since our last and first visit to CHOP,We did fund out that the insurance didn't pay,MDA did...
Tomorow I'm driving to cinc,I'll post a comment when I'm back,
see,you.
That's great!! Have a good trip and looking forward to hearing about your experience in Cinc. when you get back.
Our local MDA office is in Sterling Heights. Our S.C. is Denise Gant. She is a great a great person. She will try to help no matter what you ask. She will get you information, appointments, equipment, and she always returns calls. I think it must depend on what office you are working with. We haven't had problems. The only problems we have ever had are with drs. Some times they just do not explain things enough. We do not always know what ?s to ask. I think they just don't think about the fact that most people are dealing with this for the first time.

Karen Barnett said:
Jennifer,
Just so you know, CSHCS in MI will only pay for specialists here in MI. I just went to battle over it with them to get help for everything that is not covered under my insurance when we go to Cinc and they would not budge. They said that my son could recieve the same care here. I completely disagree. I agree though, Djamel should check into his states help. Every state program is different and called something different.
Just curious, what MDA service coordinator are you dealing with? You can send me a PM on that if you like.

Thanks,
Karen
I would appeal to the insurance company and have your referring doctor write up a letter. Not all Doctor's are created equal as far as standard/quality of care nor is DMD their speciality. Insurance companies have to give you the best care possible if they give you the option to go out of network based on an appeal process. We had an HMO in NY at one time and they would not cover the visit to CHOP since it was in PA. My pediatrician wrote a letter to the insurance company, in addition the insurance company gave me some doctors they recommended for my son to go to in NY. I called the doctors up and asked them if they provide the same care as CHOP, i.e. a multi-disciplinary approach. They didn't know what it meant so I explained it. They obviously said no since they never heard of it. I asked if they would write a letter to the insurance company stating that CHOP is better equipped to handle my son's case. The insurance company then accepted paying for the visit and future visits to CHOP. The board that process appeals for insurance companies are doctors and they too took the hippocratic oath so they couldn't obviously deny my son because of potential future lawsuits if something happened to my son if they were to deny him again even with professional doctor's recommendations.
Karen,

You should get the insurance company's recommended doctor's that they will cover and ask them if they are equal or better to handle your son's case. They will be honest because of the oath they took as a doctor and it will be their duty to refer your son to one that could provide better care. The insurance company cannot deny a recommendation from their own doctors.

Karen Barnett said:
Jennifer,
Just so you know, CSHCS in MI will only pay for specialists here in MI. I just went to battle over it with them to get help for everything that is not covered under my insurance when we go to Cinc and they would not budge. They said that my son could recieve the same care here. I completely disagree. I agree though, Djamel should check into his states help. Every state program is different and called something different.
Just curious, what MDA service coordinator are you dealing with? You can send me a PM on that if you like.

Thanks,
Karen
Here was the letter I wrote to the insurance company... I would leave out the part where I ask for them covering only one visit since I was leaving the insurance company anyways so I didn't care about future visits. However, they did come back and granted me future visits also.

August 15th, 2006
Marco DiRosa had an appointment with Dr. Richard Finkel at Children’s Hospital of
Philadelphia (CHOP) on August 10th 2006. The referral was denied by MVP for reasons that
there are Doctor’s within the MVP network that can provide the same service. This is not true.
Dr. Finkel’s group is considered one of the top interdisciplinary groups for dealing with
Duchenne Muscular Dystrophy and is considered one of the Centers of Excellence for
Duchenne. There is no such interdisciplinary group in the MVP network, these doctor’s will
send the patient to see specialists as needed and they do not work as a team. This type of “old
school” care does not work, the specialists should be a team dealing with this multi-system
disease. We have seen a doctor in the MVP Network many times so far. There was no type of
standard of care such as what supplements, stretches, physical therapy, lung and heart care that
Marco should be following described at any of the visits in New York. Dr. Finkel’s group has
given all of this in one visit, the specialists all sat with us in the same room. There is a standard
of care for Duchenne but unfortunately not many doctor’s know of this since Duchenne is rare
and only those institutions that deal with many of these cases follow such a disease in great
detail. These institutions are known as Centers of Excellence for Duchenne MD and they are to
become a model for other institutions dealing with patients with Duchenne to follow. We are
now happy that Marco was seen by Dr. Finkel and his group and he will benefit greatly already
by this single consultation we had. The report that Dr. Finkel’s group will write up for the
doctor’s here in NY for Marco and that are in the MVP network will give Marco a fighting
chance to improve his quality of life, something we strongly believe would not have been
possible without this consultation at CHOP. Rare diseases such as Duchenne should have at
least one consultation with the “Experts” who deal with Duchenne on a daily basis and not
leave it up to those who occasionally come across a handful of cases. Dr. Finkel’s group has
167 current patients with Duchenne they are seeing. It is unfortunate that I currently know
more about this disease as a parent with a boy with Duchenne than most doctor’s seeing
patient’s with this disease. We were lead down the old path of dealing with Duchenne by
simply going home and love your son, there is nothing we can do cliché. NOT TRUE! It is
most likely malpractice to make such a statement. But then again these doctors aren’t
specializing in Duchenne, aren’t kept up to date and thus don’t know any better. As a parent,
that is my job, to make sure that Marco gets the best care and MVP should be understanding
that not all the “best care” is in Network. Sometimes a single consultation with the experts is
warranted, especially with a rare disease. That is all we are asking, an approval for a referral
for a SINGLE consultation with the experts.
I’ll leave you with a quote from Dr. Elias Zerhouni, Director, National Institutes of Health in an
interview by PBS News Hour on Duchenne MD:
“It's very clear now that, to make progress, you need specialists from different disciplines
working together on the problem. In other words, instead of having the patient go to the
different disciplines, we need all the disciplines to really work and collaborate around the
patient as early as possible.”
Marco,
The states program is a "different beast". Even knowing that my HMO covered it out of state with Dr. Wong and even reading the letter of recommendation from his pediatrician for why Daniel would get better care in Cinc. they still would not budge. They don't care. They want the dollars kept in state.
Karen

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