Consultation with Duke ALS Clinic

[krnNdug]

Ken has excellent information. He has been a leader in the national ALS community for quite some time.

I was on a cruise with Joe Martin's neighbor. AA lost my big red power wheelchair in Charlotte and I never got my roho cushion back.

Joe's book are worth reading. An amazing person who lived with ALS very well.

Sorry Ken for the accolades. But you got it.
Doug

 

[Tammyrogerson]

I got in to see dr bedlack in duke and I found his whole team very helpful. Anything I have questions about they get back to me and my family very fast. I am very pleased with them in duke. I had to wait just a little while but not that long. So far I go about every two months.

 

[Mana]

Just want to add my endorsement of the Duke ALS clinic in Durham and Dr. Richard Bedlack. His excellent credentials, experience, and absolute attention and support are reflected in the entire staff. We feel extremely fortunate for my husband's early diagnosis at Duke and compassionate care since late May at the ALS clinic. There is definitely a wait for an initial appointment. If, for any reason your mother moves here and you want to go there, it is worth the travel time.

 

[wtici]

Thank you all for offering your experience and valuable advices!

Affected, you speak of my mind, that is how I feel after I read all the above responses. Gathering information from all aspects is what I am looking for so that I can make informed decisions instead of solely rely on the webpage description.

The Charlotte clinic is just minutes drive from my home, I probably should start from there. Of course, other factor I need to consider is if they’d take travel medical insurance I am planning to buy.

I did start compiling her records some time ago and doing translation myself. It is very expensive to get commercial medical translation. Hopefully the clinic will take it, after all, all the metrics use the same English abbreviations. Mom has scheduled a new EMG in a week, probably would be the most relevant test result.

Duke is just 2.5 hour drive away, might be worth of trying in addition to the local clinic. I had once sent an email to Dr Bedlack with some question, he was kind enough to respond.

 

[KenM]

The UNC clinic is in Chapel Hill, not Charlotte. I went to Atrium. I was initially happy with Atrium, then they had major staff turnover and were dysfunctional for a time, so I switched to Wake. I understand the new neurologist at Atrium and his team are good.

 

[Nuts]

I can't say enough good about Dr. Bedlack and the Duke ALS Clinic. They are not only incredibly knowledgeable, they are also wonderfully compassionate. One fo the things about Dr. Bedlack that always amazed me was that he responds to patient emails himself, and quickly. I don't know how he does it. My husband always looked forward to his visits there, despite the 2.5 hour drive. We also came away from every visit with new helpful ways to address his progression. If you can get your mom in to see Dr. Bedlack, so it.

 

[Mary2]

Can one get medical travel insurance with ALS?

 

[Nikki J]

For a US based person buying I think there would at least be massive exclusions on coverage if not outright refusal. Our policies also are only for emergency care that couldn’t reasonably be anticipated as far as I know. However the op’s mother might have different options in her home country. My only non US experience is UK policies which are like ours

 

[lgelb]

Agreed, travel insurance that covers a pre-existing condition of that magnitude seems unlikely -- another reason to be mindful of what the OP's mom really needs support with.

 

[wtici]

Happy to see continued discussion today!

Did a quick check out on UNC clinic Chapel Hill website, a physician’s referral is required for the visit. If Atrium new team is good, I will give it a try.

It is very encouraging to hear another positive experience story with Dr Bedlack, so I will definitely try to get an appointment.

As for the travel medical insurance, there are only a couple of options for people over 70. Mom is 76, dad is 81. So the primary insured will be dad. The plan is fixed coverage, including acute onset of existing conditions. Haven’t read the whole policy yet, will be weekend homework. Since mom will have a new EMG done in a week in China, I am not expecting major testing here for her, mainly a consultation for second opinion. She is still functional for the most part except for weakened arms, no need for equipment yet. The medical insurance is mainly for accidents or emergencies. But I assume the fixed coverage of doctor visits, some testing and prescription drugs would apply to her ALS clinic consultation?

 

[Nikki J]

Acute onset of pre existing conditions? If that is the coverage I doubt it would cover continuing ALS care and second opinions. I am not an insurance expert by any means but to me that sounds like you have a condition that is diagnosed but apparently controlled where you have no expectation of needing any medical intervention during your trip and something happens. Like you have asthma and controlled but you have a sudden attack and go to the emergency room. I don’t know what the fixed coverage part means. Is that something separate?

 

[wtici]

I misspoken, it is called Fixed Benefits. The plan I was interested actually doesn’t say “acute onset of existing condition”, maybe I saw it in some other plans.

• Fixed benefits plans are have specific benefit limits for different covered medical expenses. These benefit limits are not the same as the plan medical maximum.

Fixed Benefits plan has an itemized schedule with each maximum benefit defined.

Attached are a few snippets regarding to pre-existing condition from the plan brochure. Do you still think consultation is not covered?

 

[Nikki J]

It does look like regular care is covered! Except I am confused by the coinsurance being 100% of usual charges. Coinsurance is generally what the patient pays so I would clarify that. Also I found what I think is the brochure ( inf premier plus for up to 99) and there were visit maximums 100 dollars for a consult and 45 for pt. The rack rate that they are going to charge an international patient is going to be more. My visits to clinic as an established patient are billed at over 400. A new patient consult will be more. I also saw something on their main page about using their provider network. It certainly sounds optional but I would make sure it is. This is better than what US travelers can get

 

[Nikki J]

Also before you go to wherever you decide call and speak with someone. If they have an international patient department them. If not billing. Make sure you will be billed as normal for each service. They will say they can’t predict numbers but she should be billed for an office visit, pulmonary testing, pt evals as any of us are. The reason I say this is a very old anecdote reported here ( I don’t remember the details and can’t find it). Supposedly the person was from Europe and went to Duke for a second opinion. They said they only had an office consult which was mostly done by the fellow though they did see Dr Bedlack They then claimed to be charged a huge amount of money ( which sounded like a flat fee). They protested vehemently and it was eventually reduced to a large but not completely insane office visit charge. I honestly don’t know if this was reported accurately so take it with a grain of salt but it is always better to find out in advance

 

[wtici]

Nikki, thank you for going extra mile to read the plan brochure! I am glad to hear that you say it seems to cover regular care. But like you said, there are items that need clarification. In addition to the 100% co-insurance rate, I wonder if have to choose a minimum deductible of $1000 in order to get pre-existing benefits. Prescription drug only covers $150 which is almost nothing. I definitely will call the insurance broker to get clarifications.

Duke does have international patient service department. I will contact them to get some quote on the charges. When you say they should bill as normal for each service, as opposed to what? I have no clue.

Last year, I contacted Mayo Clinic in Jacksonville, they quoted a virtual visit cost around $950. I would imagine an office visit can easily cost over thousand.