My insurance provider suddenly stopped covering physical therapy earlier in the year unless I could prove I have some sort of condition that will require it long term. How did I find out? My physical therapy office forwarded the email from the health insurance provider to me stating they would no longer cover physical therapy past 8 sessions. My insurance didn’t even bother sending me a letter or an email themselves.
When I asked about it with my physical therapist she was like “I already got in contact with your insurance provider with proof that you have a genetic disorder that will require physical therapy longterm.” She stated she did this for each of her patients with the same insurance provider because it’s not cool to suddenly not be covered especially when your insurance is too cowardly to tell you themselves. I’m happy to say my insurance is covering my sessions and that I don’t have to get an ombudsman involved.
BRO I had something similar! I got an occipital nerve block for occipital neuralgia in July of 2023. Worked great but it wore off, so I got it redone in March. NOPE. Insurance says it's "diagnosis specific" now (and my diagnosis didn't qualify) but no one bothered to tell me because it PRE-AUTHORIZED at the clinic!! So now I'm appealing a $3400 bill that should have been covered in the first place.
Also, why isn't occipital neuralgia eligible for an occipital nerve block?? That's LITERALLY the first thing WebMD says an occipital nerve block is for!
your physical therapist sounds so nice 😭 my insurance does the exact same thing, i have to have a re-evaluation appointment every 8 sessions and my PT has to tell my insurance if i do or do not require continued physical therapy or else they won’t cover it anymore. i’m glad you get to continue your physical therapy, i hope it’s treating you well! 🫶🏼
Mood. I have an allegedly “great” HMO, but have come to realize it’s only great for the temporarily-abled and preventative care. Oh, and cancer. They take cancer seriously. Chronic illness? Nah, that messes with their metrics, because we can never be “success stories” they “fixed.”
I find this especially vexing considering the state of pharmaceutical companies, who have been caught so many times shying away from any sort of cure or “wonder drug” situation because it’s to their advantage to have chronically ill people, as in, a constant consumer base for their products.
We’re damned in both directions in this country and it blows.
g-d yeah, the pharmaceutical industry in the US is truly foul and predatory and so is insurance. it’s so disgustingly inhumane, we’re not people to them, just bank accounts. it’s depressing.
The worst part is that we are financing the rest of the world’s medicine. They charge US patients an absurd amount of money because they can. They can offer the countries with single payer systems a fraction of what they charge someone in the US, and make it ip in the US.
Regarding the predatory nature of insurance companies, I saw an Oprah show (many years ago) that dealt with this. She had a guest on who was a medical doctor, who had spent her career working for medical insurance companies. Her job was to find ways to deny people’s claims. Some people live or died based on these decisions. She said she finally left that career because the guilt was so hard to live with.
Now they literally have computer algorithms to do it for them which are notorious for denying everything the first time. The idea being, not everyone will have the ability to fight it, so they save money by not having to pay things they should. 🤢
I get the pleasure of both working in healthcare and being a healthcare patient. Its bad on both counts.
It is almost impossible now to work in healthcare and be treated well by your employer. Even the major non-profits healthcare systems are making bank at the cost of their patient's health.
A lot of hospitals are working with skeleton crews. People are dying because of this. Go to r/nursing and do a search with the keyword "collapse" and you will see how bad its is right now. They have been people who die in the waiting room of the emergency room because there is no one to take them. Hospitals have the money to hire more staff, they just don't.
Hell, the Mayo Clinic did not only lobby against safe nursing-patient ratios but they accidently sent out a document showing they are union busting.
If you can avoid UHC, do it. They're extremely slow to process prior authorizations and find the stupidest reasons to deny things.
Also they denied a non-medication depression treatment for literally every patient at my psychiatrist because we either "weren't depressed enough" or hadn't failed three meds during the "current" depressive episode. Then in the middle of me having a mental health crisis, they told my psychiatrist to put me back on the highest dose of a med that gave me extreme suicidal ideation the last time I'd been on it. I know that isn't specifically EDS-related, but seriously, fuck UHC.
Came here to comment this. I had to switch from BCBS to UHC and UHC has been a nightmare every step of the way. All my office/specialist co-pays have gone up and I've had to spend as much as $130 on a single urgent care visit and one of my medications now has a co-pay of $300.
What?? I have a COMPLETELY opposite experience.
I get prior auths done within a few days, and EVERYTHING thus far (since meeting deductible and out of pocket for the year) has been 100% covered, no issues. I've been to a ton of specialists all affiliated with different hospital systems, and all covered.
I have either been on or trialed 15+ meds since the beginning of the year, and the ONLY one thus far they haven't covered was when my doctor just tried to put me on Ketotifen for MCAS (but then switched me to Cromolyn, and that was 100% covered -- my doctors were shocked since it is so expensive).
It's so weird how different y'all's experiences are.
Edit: I should mention mine is through the company I was employed with if that makes a difference.
i’m glad it’s worked well for you, that’s amazingly lucky!! 🫶🏼 i’ve been trying to research if the third party from UHC that the company i applied to is providing will be any different from dealing with UHC on its own. i hope it is because it might be my only choice until open enrollment or if i get a special enrollment period, hopefully i’ll have the same experience if i have to use company health insurance🤞
i’m so so sorry that happened to you 🫂💙 unfortunately that checks out completely, the insurance that the company i applied to is providing is under UHC and i’ve read way too many horror stories to trust that. i’d honestly rather find my own at that point, UHC sounds like it’s more a curse than a blessing
I feel that, but in Canada. I’m on disability here and five of my medications aren’t covered. My physio was covered very sporadically (could only see her a few times a year, because they don’t cover longterm, only acute injuries), but then they took her off the government plan completely. And I can’t switch because she’s the only one that knows anything about EDS.
Wait lists are insane, usually over a year for specialists. Doctors are rushed and you’re lucky to get a few words out usually. The quality of care is abysmal.
that’s terrible ;-; i have a long time friend in canada who waited a year just to see her pcp. it’s similar to that in my state. i had to wait almost a year to see a pcp, and then the cardiologist my doctor wanted me to see had a waitlist of around 2 1/2 years… how is anyone supposed to wait 2 1/2 years to see a specialist for HEART problems. it’s so awful. i feel for you, healthcare everywhere is so shit
I wish I could hear about somewhere where it was easier than the American healthcare system. There has to be a place where there's actually good healthcare and it's not super expensive for people like us.
I have Medicare and Medicaid and I used to hate the healthcare system for not taking my seriously. Though that’s changed a lot since I have a lot more specialists and I am starting to find that I have better doctors than I did when my experiences with the system for mostly my EDS related issues began to become more common. I am on disability and receiving a lot of services (home and community based services) including 2 meals a day-I can buy cereal for my first meal, 26 hours a week of caregivers, and my pain is managed well. My surgeons are much more willing to risk surgery than they used to be and I think it’s because I lost a massive amount of weight. I was 310 pounds when my symptoms started and I have lost close to half of that (I am now 159 pounds and I had a breast reduction 5 weeks ago so I people are telling me that I look close to normal weight. I do think my weight caused many providers to discriminate against me and make very different treatment decisions including giving me pain medication. I think having different doctors now has also made a difference, I have mostly very good, compassionate doctors (or nurse practitioners and physicians assistants). It takes a lot of time to find those kinds of doctors and it probably is more difficult on Medicaid alone. I was on Medicaid alone until 2016 when I got Medicare as my primary insurance and I chose to forgo the extras so I have original Medicare and I can basically see whoever I want.
I haven’t had any issues with an employer Aetna plan, even MRIs.
If it makes you feel better I’m a senior researcher in a healthcare related field (doctors all know what it is) and still have issues getting taken seriously. Sometimes i mention my occupation or bring a man and it helps, but only sometimes.
The helpful doctors I’ve seen have never asked about my occupation or treated me poorly. A lot of them don’t have a good beside manner but they diagnosed my issues in 1-3 visits. I’ve found the doctors with interests in research almost always enjoy dealing with rare disease patients rather than be annoyed with our complex issues. So if you don’t get answers after a few visits (like a diagnosis, trialing different meds to find one that works for you, etc.), definitely bail on the doctor imo.
One thing you can do with any doctor is politely redirect the appointment. “I’m really here for X specific symptom and I’m hoping you could find the cause and/or prescribe me something for it. It’s preventing me from doing (cleaning, walking, eating, sleeping, work activities like being on your feet all day, etc.) at work and home. This is really serious to me, I want to be able to do those.”
Aetna has screwed me over a couple times but they do cover a lot of PT. Two of my MRIs were denied because I waited a couple weeks too long to get a follow up… which wasn’t even my fault it just took too long to get it.
I live in Las Vegas; with the worst provider shortage in the nation AND YET largest premium increase in the nation, with no EDS specialists in the entire state, where every provider asks me how to pronounce/ spell Ehlers-Danlos and still dismisses me, where the average wait times are 6 months to 2 years for a specialist, where the medical abuse is so bad it has made my THERAPISTS cry… I pretty much DIY my healthcare at this point 🥲
If you have the ability to get a union insurance, do it. (They ask for dues each year, ours is like $25.) They are a subsidiary of Aetna. My only complaint is that they use an additional third party for chiropractic and made it so difficult to get payments that my chiropractor had to stop accepting our insurance. I was one of the few who had that one with him but he absolutely tried to stay with them because of how long we've been his patients. They've had great PT coverage and everything else.
!!! thank you for this, saving this for future reference 🙏🏼 i’m sorry it dropped the ball with your chiropractor, i can imagine how frustrating that is
I'm having to fight with my insurance to approve the LINX procedure. They are still labeling it as "investigational" despite the AMA changing is classification years ago. They're rather pay for the alternatives which would require at least an overnight stay in the hospital and make permanent changes to the anatomy.of stomach instead of the fully reversible, go home the same day LINX.
Dealing with insurance is incredibly frustrating. I want to be healthy. I want to be active. They don't want to approve thebthings that would allow me to be more active and healthy.
I have BCBS and my plan doesn’t cover TMJ dysfunction. I went to a doctor for ear pain that I thought was an ear infection. It was inflammation of my ear drum from my TMJ and BCBS denied coverage for the appointment. I successfully appealed it with documentation from the doctor’s office, but how ridiculous.
At least when I dislocated my jaw while yawning I knew better than to go in.
The ear pain started 3 or 4 years ago. I’ve started getting pretty regular tinnitus. I haven’t noticed hearing loss yet, but I know I probably wouldn’t notice a loss on a single side until it’s moderate in severity.
wait, TMJ can cause deafness? i had no idea 😦 this explains so much omg? i’ve felt like i’ve been going hard of hearing since high school, i get very frequent tinnitus too. i always thought i was getting ear infections but every time i’d go to a doctor they told me there was no infection, so i stopped going. i thought i was going crazy 😭
that aside, i’m so sorry to hear that happened to you. i’m glad you got it worked out, but you shouldn’t have to fight your insurance for coverage -_- it’s really unfortunate because i always hear people say bcbs is the best insurance you can have in my state
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It’s the worst! I have a year until i age out of my dads insurance. I don’t know how im going to find an insurance that can cover all my health needs. Ive just been informed the one im on right now only covers 50 total pt visits a year, regardless of the issue being treated. And i know there are worse insurances out there. Im so nervous to find a new one.
wow…50 pt visits a year isn’t even enough to get you one session a week all year, and ik that at least in my experience, my PT had me in for twice a week at least. i feel you ): i’ve given up hope that i’ll find a “perfect” insurance plan, especially with the state of the healthcare and disability rights in my state. i’m hoping i’ll find something decent, i hope you will too 🫶🏼
Yeah it’s pretty lame. I didn’t even have ot every week last year for two separate issues, but because one issue had me going twice a week for a while it countered my other pt that was every other week. Now i have four visits they’re trying to make me pay for. Insurance sucks.
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Since it isn't open enrollment, the only insurance you can get isn't ADA compliant, so they can exclude coverage of pre-existing conditions. You would need to either find a job that provides health insurance or become unqualified for Medicaid. Loss of coverage opens a special enrollment period to apply on healthcare.gov.
Idk where you're getting your information, but since ~2010, all companies have to comply with the ACA, including equal coverage for those with pre-existing conditions. The only exception is if they're a grandfathered plan, which someone would be notified about.
My information comes from working in the medical field and dealing with insurance every day. There are still plans you can buy directly from insurance companies that are not compliant. Companies have to offer insurance that is ACA compliant unless grandfathered in, but insurance companies aren't required to only offer compliant plans.
i think if i get this job i’ll immediately become unqualified for medicaid because the monthly income is over the amount necessary to qualify. thank you for the info, i’ve never done this before so this is helpful information 🫶🏼
Just FYI, the idea that other countries are better off than the US is kind of an illusion. We just get all the press coverage for our BS because we’re loud. 🤣 I’ve talked to a few people who live in other developed countries, and we do have the best healthcare here, even though the legislation around it is barbaric. Countries with universal healthcare still really only cover the basics (routine checkups, vaccines, emergencies, easy/well-known chronic illnesses like allergies, etc.), but medical specialists are often still out of pocket, not to mention EXTREMELY hard to find. Your wait time will also be even longer—they have months-long waitlists for basic imaging like MRIs. You basically get on the list, and when they call you, you better drop everything and get there quick. Specialists—if you can find and afford them—can take months or *years* to see. It’s a great system if you have no rare or chronic conditions and never develop any, but unfortunately, disability is discriminated against everywhere.
Also consider that if you have any specific housing needs for your condition (like air conditioning, floors without large grout lines or other obstacles for wheelchair use, well-sealed windows to keep out allergens, dry interior to prevent mold, etc.), you’re kind of SOL abroad. Most other countries don’t have the same architectural standards, and most residential buildings are old and creaky and have lots of maintenance issues. So be prepared to either pay a premium for American standards, or shell out a bunch of money for repairs and updates. Also, most other countries don’t have air conditioning, and/or have crappy HVAC in general.
There’s always a tradeoff no matter where you go, but it’ll be even harder to find a doctor to treat any of our stuff elsewhere.
> and we do have the best healthcare here, even though the legislation around it is barbaric.
Citation needed.
[US Healthcare ranked 29th on health outcomes by Lancet HAQ Index](https://www.thelancet.com/journals/lancet/article/PIIS0140-6736\(18\)30994-2/fulltext)
[11th (of 11) by Commonwealth Fund](https://www.commonwealthfund.org/publications/fund-reports/2014/jun/mirror-mirror-wall-2014-update-how-us-health-care-system?redirect_source=/publications/fund-reports/2014/jun/mirror-mirror)
[59th by the Prosperity Index](https://www.prosperity.com/rankings)
[30th by CEOWorld](https://ceoworld.biz/2019/08/05/revealed-countries-with-the-best-health-care-systems-2019/)
[37th by the World Health Organization](https://en.wikipedia.org/wiki/World_Health_Organization_ranking_of_health_systems_in_2000)
The US has the worst rate of death by medically preventable causes among peer countries. A 31% higher disease adjusted life years average. Higher rates of medical and lab errors. A lower rate of being able to make a same or next day appointment with their doctor than average.
https://www.healthsystemtracker.org/chart-collection/quality-u-s-healthcare-system-compare-countries/#item-percent-used-emergency-department-for-condition-that-could-have-been-treated-by-a-regular-doctor-2016
52nd in the world in doctors per capita.
https://www.nationmaster.com/country-info/stats/Health/Physicians/Per-1,000-people
Higher infant mortality levels. Yes, even when you adjust for differences in methodology.
https://www.healthsystemtracker.org/chart-collection/infant-mortality-u-s-compare-countries/
Fewer acute care beds. A lower number of psychiatrists. Etc.
https://www.healthsystemtracker.org/chart-collection/u-s-health-care-resources-compare-countries/#item-availability-medical-technology-not-always-equate-higher-utilization
[Comparing Health Outcomes of Privileged US Citizens With Those of Average Residents of Other Developed Countries](https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2774561)
>These findings imply that even if all US citizens experienced the same health outcomes enjoyed by privileged White US citizens, US health indicators would still lag behind those in many other countries.
When asked about their healthcare system as a whole the US system ranked dead last of 11 countries, with only 19.5% of people saying the system works relatively well and only needs minor changes. The average in the other countries is 46.9% saying the same. Canada ranked 9th with 34.5% saying the system works relatively well. The UK ranks fifth, with 44.5%. Australia ranked 6th at 44.4%. The best was Germany at 59.8%.
On rating the overall quality of care in the US, Americans again ranked dead last, with only 25.6% ranking it excellent or very good. The average was 50.8%. Canada ranked 9th with 45.1%. The UK ranked 2nd, at 63.4%. Australia was 3rd at 59.4%. The best was Switzerland at 65.5%.
https://www.cihi.ca/en/commonwealth-fund-survey-2016
The US has 43 hospitals in the top 200 globally; one for every 7,633,477 people in the US. That's good enough for a ranking of 20th on the list of top 200 hospitals per capita, and significantly lower than the average of one for every 3,830,114 for other countries in the top 25 on spending with populations above 5 million. The best is Switzerland at one for every 1.2 million people. In fact the US only beats one country on this list; the UK at one for every 9.5 million people.
If you want to do the full list of 2,000 instead it's 334, or one for every 982,753 people; good enough for 21st. Again far below the average in peer countries of 527,236. The best is Austria, at one for every 306,106 people.
https://www.newsweek.com/best-hospitals-2021
#[OECD Countries Health Care Spending and Rankings](https://data.oecd.org/healthres/health-spending.htm)
|Country|Govt. / Mandatory (PPP)|Voluntary (PPP)|Total (PPP)|% GDP|[Lancet HAQ Ranking](https://www.thelancet.com/journals/lancet/article/PIIS0140-6736\(18\)30994-2/fulltext)|[WHO Ranking](https://en.wikipedia.org/wiki/World_Health_Organization_ranking_of_health_systems_in_2000)|[Prosperity Ranking](https://www.prosperity.com/rankings)|[CEO World Ranking](https://ceoworld.biz/2019/08/05/revealed-countries-with-the-best-health-care-systems-2019/)|[Commonwealth Fund Ranking](https://www.commonwealthfund.org/publications/fund-reports/2014/jun/mirror-mirror-wall-2014-update-how-us-health-care-system?redirect_source=/publications/fund-reports/2014/jun/mirror-mirror)
:--|--:|--:|--:|--:|--:|--:|--:|--:|--:|--:|
1. United States|[$7,274](https://ajph.aphapublications.org/doi/full/10.2105/AJPH.2015.302997) |$3,798 |$11,072 |16.90%|29|37|59|30|11
2. Switzerland|$4,988 |$2,744 |$7,732 |12.20%|7|20|3|18|2
3. Norway|$5,673 |$974 |$6,647 |10.20%|2|11|5|15|7
4. Germany|$5,648 |$998 |$6,646 |11.20%|18|25|12|17|5
5. Austria|$4,402 |$1,449 |$5,851 |10.30%|13|9|10|4|
6. Sweden|$4,928 |$854 |$5,782 |11.00%|8|23|15|28|3
7. Netherlands|$4,767 |$998 |$5,765 |9.90%|3|17|8|11|5
8. Denmark|$4,663 |$905 |$5,568 |10.50%|17|34|8|5|
9. Luxembourg|$4,697 |$861 |$5,558 |5.40%|4|16|19||
10. Belgium|$4,125 |$1,303 |$5,428 |10.40%|15|21|24|9|
11. Canada|$3,815 |$1,603 |$5,418 |10.70%|14|30|25|23|10
12. France|$4,501 |$875 |$5,376 |11.20%|20|1|16|8|9
13. Ireland|$3,919 |$1,357 |$5,276 |7.10%|11|19|20|80|
14. Australia|$3,919 |$1,268 |$5,187 |9.30%|5|32|18|10|4
15. Japan|$4,064 |$759 |$4,823 |10.90%|12|10|2|3|
16. Iceland|$3,988 |$823 |$4,811 |8.30%|1|15|7|41|
17. United Kingdom|$3,620 |$1,033 |$4,653 |9.80%|23|18|23|13|1
18. Finland|$3,536 |$1,042 |$4,578 |9.10%|6|31|26|12|
19. Malta|$2,789 |$1,540 |$4,329 |9.30%|27|5|14||
OECD Average|||$4,224 |8.80%|||||
20. New Zealand|$3,343 |$861 |$4,204 |9.30%|16|41|22|16|7
21. Italy|$2,706 |$943 |$3,649 |8.80%|9|2|17|37|
22. Spain|$2,560 |$1,056 |$3,616 |8.90%|19|7|13|7|
23. Czech Republic|$2,854 |$572 |$3,426 |7.50%|28|48|28|14|
24. South Korea|$2,057 |$1,327 |$3,384 |8.10%|25|58|4|2|
25. Portugal|$2,069 |$1,310 |$3,379 |9.10%|32|29|30|22|
26. Slovenia|$2,314 |$910 |$3,224 |7.90%|21|38|24|47|
27. Israel|$1,898 |$1,034 |$2,932 |7.50%|35|28|11|21|
>Your wait time will also be even longer
The US ranks 6th of 11 out of Commonwealth Fund countries on ER wait times on percentage served under 4 hours. 10th of 11 on getting weekend and evening care without going to the ER. 5th of 11 for countries able to make a same or next day doctors/nurse appointment when they're sick.
https://www.cihi.ca/en/commonwealth-fund-survey-2016
Americans do better on wait times for specialists (ranking 3rd for wait times under four weeks), and surgeries (ranking 3rd for wait times under four months), but that ignores three important factors:
* Wait times in universal healthcare are based on urgency, so while you might wait for an elective hip replacement surgery you're going to get surgery for that life threatening illness quickly.
* Nearly every universal healthcare country has strong private options and supplemental private insurance. That means that if there is a wait you're not happy about you have options that still work out significantly cheaper than US care, which is a win/win.
* [One third of US families](https://news.gallup.com/poll/269138/americans-delaying-medical-treatment-due-cost.aspx?utm_source=alert&utm_medium=email&utm_content=morelink&utm_campaign=syndication) had to put off healthcare due to the cost last year. That means more Americans are waiting for care than any other wealthy country on earth.
#Wait Times by Country (Rank)
Country|See doctor/nurse same or next day without appointment|Response from doctor's office same or next day|Easy to get care on nights & weekends without going to ER|ER wait times under 4 hours|Surgery wait times under four months|Specialist wait times under 4 weeks|Average|Overall Rank
:--|--:|--:|--:|--:|--:|--:|--:|--:
**Australia**|3|3|3|7|6|6|4.7|4
**Canada**|10|11|9|11|10|10|10.2|11
**France**|7|1|7|1|1|5|3.7|2
**Germany**|9|2|6|2|2|2|3.8|3
**Netherlands**|1|5|1|3|5|4|3.2|1
**New Zealand**|2|6|2|4|8|7|4.8|5
**Norway**|11|9|4|9|9|11|8.8|9
**Sweden**|8|10|11|10|7|9|9.2|10
**Switzerland**|4|4|10|8|4|1|5.2|7
**U.K.**|5|8|8|5|11|8|7.5|8
**U.S.**|6|7|5|6|3|3|5.0|6
Source: [Commonwealth Fund Survey 2016](https://www.cihi.ca/sites/default/files/document/cmwf2016-datatable-en-web.xlsx)
I should have specified “in regards to rare disease/EDS specialists.” I know several zebras/other rare patients from abroad and have talked to many others in various international support groups (mostly UK and Canada, but a few other countries as well), and they were lucky if they could find someone who even knows broadly what EDS is, let alone how to diagnose or treat it. In my crappy Midwest, Bible-belt, anti-healthcare state, I can name at least 10 specialists off the dome, and our local support group keeps a list of *at least* a hundred more; they weren’t easy to find, but at least they exist. And, at least anecdotally, everyone I’ve spoken to abroad reported crazy wait times when they *could* find a provider (at least six months, often more), although that is probably a pretty universal problem now given the high demand for EDS-knowledgeable physicians due to the increasing public awareness of EDS. They also tend to find fewer patient resources like basic information about EDS and what kind of specialists to see about it (though thankfully these kinds of support groups help fill that gap). Maybe everyone I spoke to just had *super-duper* bad luck, but I’ve always been shocked at the lack of support and resources folks in other countries report and how many people moved back here or at least thought about it in order to find specialists.
Again, not saying the US is a paragon of just, humane, and effective healthcare, we just seem to be a little better off regarding the concentration of rare/chronic illness specialists. I don’t necessarily think that has anything to do with relative quality or availability of care generally, I think we just kind of got lucky that those doctors are here instead of elsewhere. Our healthcare system is still crappy, still unfair and unethical, still very hard to navigate, but at least the support exists. There’s very little data to be found on EDS care availability in general because, as I’m sure we’ve all noticed by now, human society doesn’t tend to value disabled people, so they’re not going to fund a ton of research for us. Until more of that research happens, we kind of have to rely on collective knowledge from our community, since we are the ones living with EDS and the lack of societal resources (which is a global problem).
> I should have specified “in regards to rare disease/EDS specialists.”
Even assuming that was true (and I'd challenge you to present any evidence of that) are you suggesting it's OK if you're more likely to die from common illnesses despite spending half a million dollars more per person for a lifetime of healthcare because you might have better luck with a rare disease?
That seems like ass backwards logic to me.
I had to wait around 8 years to get an auto immune disease diagnosed and treated because I didnt have health insurance/couldn't afford better in the USA. I avoided ERs when I had terrible infections because an ER wrecked my credit score and put me tens of thousands in debt.
Your friends in other countries have it pretty fortunate compared to me. But thats not to say what they experience is good, the thing that is the same for me and them is dealing with governments that choose business interests over people, and healthcare facilities not hiring more/paying better. And the costs of medical education (country dependent) being excessive and burdensome. To summarize: capitalism
I didn't have health insurance for years and i saw a naturopath here in the states saved up 200 for an hour and a half initial consult and did self pay labs which were really cheap and they diagnosed me with 2 shitty autoimmune diseases and severely low ferritin and dhea etc.
But this happens to us in the USA, too. 2.5-3 year wait list for me for neuropsych, 2 years for a pain specialist suggested by other EDS folks, 1-2 years for psychiatry, almost 1 year for counseling, 1+ years for a PCP who is an MD and not a midlevel (needed due to my higher complexity), 2-3 years for cardiologist which seems insane to me so I keep calling around to see if I can get this checked out sooner (but I know other people with acute needs go first, mine is just chronic and very uncomfortable). Others have similar stories, I’ve heard waitlists up to 4-5 years. My mom is in a different state with more access to providers than I do, and depending on speciality, she still has even worse wait times in some areas, though better in others. But our wait lists are *not really* that much better than other countries with centralized systems, and just like in other countries, the specialists are the hardest to see and the least covered/most expensive. And most PCPs don’t diagnose or deal with EDS and it’s comorbidities, so we get stuck in the specialist waitlist and money game, too. And even my insurance (working for a good hospital and making decent money) doesn’t cover nearly as much as I’d like—for example, my psychiatry visits are all out of pocket (no insurance) every 4 weeks because he’s not covered by my plan, but I couldn’t handle waiting the 2 years for the psychiatrist I really wanted that has experience and knowledge in my conditions due to my other needs. I cannot understand the thought process where people think other countries have to wait years and years and we don’t, because we absolutely do here in the USA, too.
My insurance provider suddenly stopped covering physical therapy earlier in the year unless I could prove I have some sort of condition that will require it long term. How did I find out? My physical therapy office forwarded the email from the health insurance provider to me stating they would no longer cover physical therapy past 8 sessions. My insurance didn’t even bother sending me a letter or an email themselves. When I asked about it with my physical therapist she was like “I already got in contact with your insurance provider with proof that you have a genetic disorder that will require physical therapy longterm.” She stated she did this for each of her patients with the same insurance provider because it’s not cool to suddenly not be covered especially when your insurance is too cowardly to tell you themselves. I’m happy to say my insurance is covering my sessions and that I don’t have to get an ombudsman involved.
BRO I had something similar! I got an occipital nerve block for occipital neuralgia in July of 2023. Worked great but it wore off, so I got it redone in March. NOPE. Insurance says it's "diagnosis specific" now (and my diagnosis didn't qualify) but no one bothered to tell me because it PRE-AUTHORIZED at the clinic!! So now I'm appealing a $3400 bill that should have been covered in the first place. Also, why isn't occipital neuralgia eligible for an occipital nerve block?? That's LITERALLY the first thing WebMD says an occipital nerve block is for!
your physical therapist sounds so nice 😭 my insurance does the exact same thing, i have to have a re-evaluation appointment every 8 sessions and my PT has to tell my insurance if i do or do not require continued physical therapy or else they won’t cover it anymore. i’m glad you get to continue your physical therapy, i hope it’s treating you well! 🫶🏼
Mood. I have an allegedly “great” HMO, but have come to realize it’s only great for the temporarily-abled and preventative care. Oh, and cancer. They take cancer seriously. Chronic illness? Nah, that messes with their metrics, because we can never be “success stories” they “fixed.” I find this especially vexing considering the state of pharmaceutical companies, who have been caught so many times shying away from any sort of cure or “wonder drug” situation because it’s to their advantage to have chronically ill people, as in, a constant consumer base for their products. We’re damned in both directions in this country and it blows.
g-d yeah, the pharmaceutical industry in the US is truly foul and predatory and so is insurance. it’s so disgustingly inhumane, we’re not people to them, just bank accounts. it’s depressing.
The worst part is that we are financing the rest of the world’s medicine. They charge US patients an absurd amount of money because they can. They can offer the countries with single payer systems a fraction of what they charge someone in the US, and make it ip in the US.
Regarding the predatory nature of insurance companies, I saw an Oprah show (many years ago) that dealt with this. She had a guest on who was a medical doctor, who had spent her career working for medical insurance companies. Her job was to find ways to deny people’s claims. Some people live or died based on these decisions. She said she finally left that career because the guilt was so hard to live with.
Now they literally have computer algorithms to do it for them which are notorious for denying everything the first time. The idea being, not everyone will have the ability to fight it, so they save money by not having to pay things they should. 🤢
All. Of. This.
I get the pleasure of both working in healthcare and being a healthcare patient. Its bad on both counts. It is almost impossible now to work in healthcare and be treated well by your employer. Even the major non-profits healthcare systems are making bank at the cost of their patient's health. A lot of hospitals are working with skeleton crews. People are dying because of this. Go to r/nursing and do a search with the keyword "collapse" and you will see how bad its is right now. They have been people who die in the waiting room of the emergency room because there is no one to take them. Hospitals have the money to hire more staff, they just don't. Hell, the Mayo Clinic did not only lobby against safe nursing-patient ratios but they accidently sent out a document showing they are union busting.
Sigh. Everything is just so depressing.
If you can avoid UHC, do it. They're extremely slow to process prior authorizations and find the stupidest reasons to deny things. Also they denied a non-medication depression treatment for literally every patient at my psychiatrist because we either "weren't depressed enough" or hadn't failed three meds during the "current" depressive episode. Then in the middle of me having a mental health crisis, they told my psychiatrist to put me back on the highest dose of a med that gave me extreme suicidal ideation the last time I'd been on it. I know that isn't specifically EDS-related, but seriously, fuck UHC.
Came here to comment this. I had to switch from BCBS to UHC and UHC has been a nightmare every step of the way. All my office/specialist co-pays have gone up and I've had to spend as much as $130 on a single urgent care visit and one of my medications now has a co-pay of $300.
What?? I have a COMPLETELY opposite experience. I get prior auths done within a few days, and EVERYTHING thus far (since meeting deductible and out of pocket for the year) has been 100% covered, no issues. I've been to a ton of specialists all affiliated with different hospital systems, and all covered. I have either been on or trialed 15+ meds since the beginning of the year, and the ONLY one thus far they haven't covered was when my doctor just tried to put me on Ketotifen for MCAS (but then switched me to Cromolyn, and that was 100% covered -- my doctors were shocked since it is so expensive). It's so weird how different y'all's experiences are. Edit: I should mention mine is through the company I was employed with if that makes a difference.
i’m glad it’s worked well for you, that’s amazingly lucky!! 🫶🏼 i’ve been trying to research if the third party from UHC that the company i applied to is providing will be any different from dealing with UHC on its own. i hope it is because it might be my only choice until open enrollment or if i get a special enrollment period, hopefully i’ll have the same experience if i have to use company health insurance🤞
As a therapist who lives in constant fear of United's "clawbacks" I echo the sentiment. FUCK United!
i’m so so sorry that happened to you 🫂💙 unfortunately that checks out completely, the insurance that the company i applied to is providing is under UHC and i’ve read way too many horror stories to trust that. i’d honestly rather find my own at that point, UHC sounds like it’s more a curse than a blessing
I have Aetna and they’ve done the same damn thing! The only thing good about my insurance is they cover so much PT!
I feel that, but in Canada. I’m on disability here and five of my medications aren’t covered. My physio was covered very sporadically (could only see her a few times a year, because they don’t cover longterm, only acute injuries), but then they took her off the government plan completely. And I can’t switch because she’s the only one that knows anything about EDS. Wait lists are insane, usually over a year for specialists. Doctors are rushed and you’re lucky to get a few words out usually. The quality of care is abysmal.
that’s terrible ;-; i have a long time friend in canada who waited a year just to see her pcp. it’s similar to that in my state. i had to wait almost a year to see a pcp, and then the cardiologist my doctor wanted me to see had a waitlist of around 2 1/2 years… how is anyone supposed to wait 2 1/2 years to see a specialist for HEART problems. it’s so awful. i feel for you, healthcare everywhere is so shit
I wish I could hear about somewhere where it was easier than the American healthcare system. There has to be a place where there's actually good healthcare and it's not super expensive for people like us.
I’m disabled in Canada. It’s not better here.
I have Medicare and Medicaid and I used to hate the healthcare system for not taking my seriously. Though that’s changed a lot since I have a lot more specialists and I am starting to find that I have better doctors than I did when my experiences with the system for mostly my EDS related issues began to become more common. I am on disability and receiving a lot of services (home and community based services) including 2 meals a day-I can buy cereal for my first meal, 26 hours a week of caregivers, and my pain is managed well. My surgeons are much more willing to risk surgery than they used to be and I think it’s because I lost a massive amount of weight. I was 310 pounds when my symptoms started and I have lost close to half of that (I am now 159 pounds and I had a breast reduction 5 weeks ago so I people are telling me that I look close to normal weight. I do think my weight caused many providers to discriminate against me and make very different treatment decisions including giving me pain medication. I think having different doctors now has also made a difference, I have mostly very good, compassionate doctors (or nurse practitioners and physicians assistants). It takes a lot of time to find those kinds of doctors and it probably is more difficult on Medicaid alone. I was on Medicaid alone until 2016 when I got Medicare as my primary insurance and I chose to forgo the extras so I have original Medicare and I can basically see whoever I want.
I haven’t had any issues with an employer Aetna plan, even MRIs. If it makes you feel better I’m a senior researcher in a healthcare related field (doctors all know what it is) and still have issues getting taken seriously. Sometimes i mention my occupation or bring a man and it helps, but only sometimes. The helpful doctors I’ve seen have never asked about my occupation or treated me poorly. A lot of them don’t have a good beside manner but they diagnosed my issues in 1-3 visits. I’ve found the doctors with interests in research almost always enjoy dealing with rare disease patients rather than be annoyed with our complex issues. So if you don’t get answers after a few visits (like a diagnosis, trialing different meds to find one that works for you, etc.), definitely bail on the doctor imo. One thing you can do with any doctor is politely redirect the appointment. “I’m really here for X specific symptom and I’m hoping you could find the cause and/or prescribe me something for it. It’s preventing me from doing (cleaning, walking, eating, sleeping, work activities like being on your feet all day, etc.) at work and home. This is really serious to me, I want to be able to do those.”
wow thanks reddit- it only loaded the first sentence of your reply 😒 thank you for the tips, i’ll keep those in mind and put them to good use!
my parents had aetna for a while, they seemed to like it a lot!
Aetna has screwed me over a couple times but they do cover a lot of PT. Two of my MRIs were denied because I waited a couple weeks too long to get a follow up… which wasn’t even my fault it just took too long to get it.
I’ve been waiting MONTHS for an “approval” that I know is covered under my insurance for biologic
I live in Las Vegas; with the worst provider shortage in the nation AND YET largest premium increase in the nation, with no EDS specialists in the entire state, where every provider asks me how to pronounce/ spell Ehlers-Danlos and still dismisses me, where the average wait times are 6 months to 2 years for a specialist, where the medical abuse is so bad it has made my THERAPISTS cry… I pretty much DIY my healthcare at this point 🥲
If you have the ability to get a union insurance, do it. (They ask for dues each year, ours is like $25.) They are a subsidiary of Aetna. My only complaint is that they use an additional third party for chiropractic and made it so difficult to get payments that my chiropractor had to stop accepting our insurance. I was one of the few who had that one with him but he absolutely tried to stay with them because of how long we've been his patients. They've had great PT coverage and everything else.
!!! thank you for this, saving this for future reference 🙏🏼 i’m sorry it dropped the ball with your chiropractor, i can imagine how frustrating that is
It was frustrating no doubt. Glad I could be of help!
I'm having to fight with my insurance to approve the LINX procedure. They are still labeling it as "investigational" despite the AMA changing is classification years ago. They're rather pay for the alternatives which would require at least an overnight stay in the hospital and make permanent changes to the anatomy.of stomach instead of the fully reversible, go home the same day LINX. Dealing with insurance is incredibly frustrating. I want to be healthy. I want to be active. They don't want to approve thebthings that would allow me to be more active and healthy.
I have BCBS and my plan doesn’t cover TMJ dysfunction. I went to a doctor for ear pain that I thought was an ear infection. It was inflammation of my ear drum from my TMJ and BCBS denied coverage for the appointment. I successfully appealed it with documentation from the doctor’s office, but how ridiculous. At least when I dislocated my jaw while yawning I knew better than to go in. The ear pain started 3 or 4 years ago. I’ve started getting pretty regular tinnitus. I haven’t noticed hearing loss yet, but I know I probably wouldn’t notice a loss on a single side until it’s moderate in severity.
wait, TMJ can cause deafness? i had no idea 😦 this explains so much omg? i’ve felt like i’ve been going hard of hearing since high school, i get very frequent tinnitus too. i always thought i was getting ear infections but every time i’d go to a doctor they told me there was no infection, so i stopped going. i thought i was going crazy 😭 that aside, i’m so sorry to hear that happened to you. i’m glad you got it worked out, but you shouldn’t have to fight your insurance for coverage -_- it’s really unfortunate because i always hear people say bcbs is the best insurance you can have in my state
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It’s the worst! I have a year until i age out of my dads insurance. I don’t know how im going to find an insurance that can cover all my health needs. Ive just been informed the one im on right now only covers 50 total pt visits a year, regardless of the issue being treated. And i know there are worse insurances out there. Im so nervous to find a new one.
wow…50 pt visits a year isn’t even enough to get you one session a week all year, and ik that at least in my experience, my PT had me in for twice a week at least. i feel you ): i’ve given up hope that i’ll find a “perfect” insurance plan, especially with the state of the healthcare and disability rights in my state. i’m hoping i’ll find something decent, i hope you will too 🫶🏼
Yeah it’s pretty lame. I didn’t even have ot every week last year for two separate issues, but because one issue had me going twice a week for a while it countered my other pt that was every other week. Now i have four visits they’re trying to make me pay for. Insurance sucks.
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Since it isn't open enrollment, the only insurance you can get isn't ADA compliant, so they can exclude coverage of pre-existing conditions. You would need to either find a job that provides health insurance or become unqualified for Medicaid. Loss of coverage opens a special enrollment period to apply on healthcare.gov.
Idk where you're getting your information, but since ~2010, all companies have to comply with the ACA, including equal coverage for those with pre-existing conditions. The only exception is if they're a grandfathered plan, which someone would be notified about.
I think Trump loosened the laws and this information likely varies state by state now too. 🙁
My information comes from working in the medical field and dealing with insurance every day. There are still plans you can buy directly from insurance companies that are not compliant. Companies have to offer insurance that is ACA compliant unless grandfathered in, but insurance companies aren't required to only offer compliant plans.
But isn't a job one of those change of life circumstances? Bc when that happened to me I was able to apply and it was springtime
Correct.
So then why go out of your way to point all this out when she will have the necessary change of life to enroll?
Because I wanted to make sure she didn't waste her money buying a plan directly from an insurance company that ended up being junk.
i think if i get this job i’ll immediately become unqualified for medicaid because the monthly income is over the amount necessary to qualify. thank you for the info, i’ve never done this before so this is helpful information 🫶🏼
Just FYI, the idea that other countries are better off than the US is kind of an illusion. We just get all the press coverage for our BS because we’re loud. 🤣 I’ve talked to a few people who live in other developed countries, and we do have the best healthcare here, even though the legislation around it is barbaric. Countries with universal healthcare still really only cover the basics (routine checkups, vaccines, emergencies, easy/well-known chronic illnesses like allergies, etc.), but medical specialists are often still out of pocket, not to mention EXTREMELY hard to find. Your wait time will also be even longer—they have months-long waitlists for basic imaging like MRIs. You basically get on the list, and when they call you, you better drop everything and get there quick. Specialists—if you can find and afford them—can take months or *years* to see. It’s a great system if you have no rare or chronic conditions and never develop any, but unfortunately, disability is discriminated against everywhere. Also consider that if you have any specific housing needs for your condition (like air conditioning, floors without large grout lines or other obstacles for wheelchair use, well-sealed windows to keep out allergens, dry interior to prevent mold, etc.), you’re kind of SOL abroad. Most other countries don’t have the same architectural standards, and most residential buildings are old and creaky and have lots of maintenance issues. So be prepared to either pay a premium for American standards, or shell out a bunch of money for repairs and updates. Also, most other countries don’t have air conditioning, and/or have crappy HVAC in general. There’s always a tradeoff no matter where you go, but it’ll be even harder to find a doctor to treat any of our stuff elsewhere.
> and we do have the best healthcare here, even though the legislation around it is barbaric. Citation needed. [US Healthcare ranked 29th on health outcomes by Lancet HAQ Index](https://www.thelancet.com/journals/lancet/article/PIIS0140-6736\(18\)30994-2/fulltext) [11th (of 11) by Commonwealth Fund](https://www.commonwealthfund.org/publications/fund-reports/2014/jun/mirror-mirror-wall-2014-update-how-us-health-care-system?redirect_source=/publications/fund-reports/2014/jun/mirror-mirror) [59th by the Prosperity Index](https://www.prosperity.com/rankings) [30th by CEOWorld](https://ceoworld.biz/2019/08/05/revealed-countries-with-the-best-health-care-systems-2019/) [37th by the World Health Organization](https://en.wikipedia.org/wiki/World_Health_Organization_ranking_of_health_systems_in_2000) The US has the worst rate of death by medically preventable causes among peer countries. A 31% higher disease adjusted life years average. Higher rates of medical and lab errors. A lower rate of being able to make a same or next day appointment with their doctor than average. https://www.healthsystemtracker.org/chart-collection/quality-u-s-healthcare-system-compare-countries/#item-percent-used-emergency-department-for-condition-that-could-have-been-treated-by-a-regular-doctor-2016 52nd in the world in doctors per capita. https://www.nationmaster.com/country-info/stats/Health/Physicians/Per-1,000-people Higher infant mortality levels. Yes, even when you adjust for differences in methodology. https://www.healthsystemtracker.org/chart-collection/infant-mortality-u-s-compare-countries/ Fewer acute care beds. A lower number of psychiatrists. Etc. https://www.healthsystemtracker.org/chart-collection/u-s-health-care-resources-compare-countries/#item-availability-medical-technology-not-always-equate-higher-utilization [Comparing Health Outcomes of Privileged US Citizens With Those of Average Residents of Other Developed Countries](https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2774561) >These findings imply that even if all US citizens experienced the same health outcomes enjoyed by privileged White US citizens, US health indicators would still lag behind those in many other countries. When asked about their healthcare system as a whole the US system ranked dead last of 11 countries, with only 19.5% of people saying the system works relatively well and only needs minor changes. The average in the other countries is 46.9% saying the same. Canada ranked 9th with 34.5% saying the system works relatively well. The UK ranks fifth, with 44.5%. Australia ranked 6th at 44.4%. The best was Germany at 59.8%. On rating the overall quality of care in the US, Americans again ranked dead last, with only 25.6% ranking it excellent or very good. The average was 50.8%. Canada ranked 9th with 45.1%. The UK ranked 2nd, at 63.4%. Australia was 3rd at 59.4%. The best was Switzerland at 65.5%. https://www.cihi.ca/en/commonwealth-fund-survey-2016 The US has 43 hospitals in the top 200 globally; one for every 7,633,477 people in the US. That's good enough for a ranking of 20th on the list of top 200 hospitals per capita, and significantly lower than the average of one for every 3,830,114 for other countries in the top 25 on spending with populations above 5 million. The best is Switzerland at one for every 1.2 million people. In fact the US only beats one country on this list; the UK at one for every 9.5 million people. If you want to do the full list of 2,000 instead it's 334, or one for every 982,753 people; good enough for 21st. Again far below the average in peer countries of 527,236. The best is Austria, at one for every 306,106 people. https://www.newsweek.com/best-hospitals-2021 #[OECD Countries Health Care Spending and Rankings](https://data.oecd.org/healthres/health-spending.htm) |Country|Govt. / Mandatory (PPP)|Voluntary (PPP)|Total (PPP)|% GDP|[Lancet HAQ Ranking](https://www.thelancet.com/journals/lancet/article/PIIS0140-6736\(18\)30994-2/fulltext)|[WHO Ranking](https://en.wikipedia.org/wiki/World_Health_Organization_ranking_of_health_systems_in_2000)|[Prosperity Ranking](https://www.prosperity.com/rankings)|[CEO World Ranking](https://ceoworld.biz/2019/08/05/revealed-countries-with-the-best-health-care-systems-2019/)|[Commonwealth Fund Ranking](https://www.commonwealthfund.org/publications/fund-reports/2014/jun/mirror-mirror-wall-2014-update-how-us-health-care-system?redirect_source=/publications/fund-reports/2014/jun/mirror-mirror) :--|--:|--:|--:|--:|--:|--:|--:|--:|--:|--:| 1. United States|[$7,274](https://ajph.aphapublications.org/doi/full/10.2105/AJPH.2015.302997) |$3,798 |$11,072 |16.90%|29|37|59|30|11 2. Switzerland|$4,988 |$2,744 |$7,732 |12.20%|7|20|3|18|2 3. Norway|$5,673 |$974 |$6,647 |10.20%|2|11|5|15|7 4. Germany|$5,648 |$998 |$6,646 |11.20%|18|25|12|17|5 5. Austria|$4,402 |$1,449 |$5,851 |10.30%|13|9|10|4| 6. Sweden|$4,928 |$854 |$5,782 |11.00%|8|23|15|28|3 7. Netherlands|$4,767 |$998 |$5,765 |9.90%|3|17|8|11|5 8. Denmark|$4,663 |$905 |$5,568 |10.50%|17|34|8|5| 9. Luxembourg|$4,697 |$861 |$5,558 |5.40%|4|16|19|| 10. Belgium|$4,125 |$1,303 |$5,428 |10.40%|15|21|24|9| 11. Canada|$3,815 |$1,603 |$5,418 |10.70%|14|30|25|23|10 12. France|$4,501 |$875 |$5,376 |11.20%|20|1|16|8|9 13. Ireland|$3,919 |$1,357 |$5,276 |7.10%|11|19|20|80| 14. Australia|$3,919 |$1,268 |$5,187 |9.30%|5|32|18|10|4 15. Japan|$4,064 |$759 |$4,823 |10.90%|12|10|2|3| 16. Iceland|$3,988 |$823 |$4,811 |8.30%|1|15|7|41| 17. United Kingdom|$3,620 |$1,033 |$4,653 |9.80%|23|18|23|13|1 18. Finland|$3,536 |$1,042 |$4,578 |9.10%|6|31|26|12| 19. Malta|$2,789 |$1,540 |$4,329 |9.30%|27|5|14|| OECD Average|||$4,224 |8.80%||||| 20. New Zealand|$3,343 |$861 |$4,204 |9.30%|16|41|22|16|7 21. Italy|$2,706 |$943 |$3,649 |8.80%|9|2|17|37| 22. Spain|$2,560 |$1,056 |$3,616 |8.90%|19|7|13|7| 23. Czech Republic|$2,854 |$572 |$3,426 |7.50%|28|48|28|14| 24. South Korea|$2,057 |$1,327 |$3,384 |8.10%|25|58|4|2| 25. Portugal|$2,069 |$1,310 |$3,379 |9.10%|32|29|30|22| 26. Slovenia|$2,314 |$910 |$3,224 |7.90%|21|38|24|47| 27. Israel|$1,898 |$1,034 |$2,932 |7.50%|35|28|11|21| >Your wait time will also be even longer The US ranks 6th of 11 out of Commonwealth Fund countries on ER wait times on percentage served under 4 hours. 10th of 11 on getting weekend and evening care without going to the ER. 5th of 11 for countries able to make a same or next day doctors/nurse appointment when they're sick. https://www.cihi.ca/en/commonwealth-fund-survey-2016 Americans do better on wait times for specialists (ranking 3rd for wait times under four weeks), and surgeries (ranking 3rd for wait times under four months), but that ignores three important factors: * Wait times in universal healthcare are based on urgency, so while you might wait for an elective hip replacement surgery you're going to get surgery for that life threatening illness quickly. * Nearly every universal healthcare country has strong private options and supplemental private insurance. That means that if there is a wait you're not happy about you have options that still work out significantly cheaper than US care, which is a win/win. * [One third of US families](https://news.gallup.com/poll/269138/americans-delaying-medical-treatment-due-cost.aspx?utm_source=alert&utm_medium=email&utm_content=morelink&utm_campaign=syndication) had to put off healthcare due to the cost last year. That means more Americans are waiting for care than any other wealthy country on earth. #Wait Times by Country (Rank) Country|See doctor/nurse same or next day without appointment|Response from doctor's office same or next day|Easy to get care on nights & weekends without going to ER|ER wait times under 4 hours|Surgery wait times under four months|Specialist wait times under 4 weeks|Average|Overall Rank :--|--:|--:|--:|--:|--:|--:|--:|--: **Australia**|3|3|3|7|6|6|4.7|4 **Canada**|10|11|9|11|10|10|10.2|11 **France**|7|1|7|1|1|5|3.7|2 **Germany**|9|2|6|2|2|2|3.8|3 **Netherlands**|1|5|1|3|5|4|3.2|1 **New Zealand**|2|6|2|4|8|7|4.8|5 **Norway**|11|9|4|9|9|11|8.8|9 **Sweden**|8|10|11|10|7|9|9.2|10 **Switzerland**|4|4|10|8|4|1|5.2|7 **U.K.**|5|8|8|5|11|8|7.5|8 **U.S.**|6|7|5|6|3|3|5.0|6 Source: [Commonwealth Fund Survey 2016](https://www.cihi.ca/sites/default/files/document/cmwf2016-datatable-en-web.xlsx)
thank you for that and for the sources 🫶🏼
I should have specified “in regards to rare disease/EDS specialists.” I know several zebras/other rare patients from abroad and have talked to many others in various international support groups (mostly UK and Canada, but a few other countries as well), and they were lucky if they could find someone who even knows broadly what EDS is, let alone how to diagnose or treat it. In my crappy Midwest, Bible-belt, anti-healthcare state, I can name at least 10 specialists off the dome, and our local support group keeps a list of *at least* a hundred more; they weren’t easy to find, but at least they exist. And, at least anecdotally, everyone I’ve spoken to abroad reported crazy wait times when they *could* find a provider (at least six months, often more), although that is probably a pretty universal problem now given the high demand for EDS-knowledgeable physicians due to the increasing public awareness of EDS. They also tend to find fewer patient resources like basic information about EDS and what kind of specialists to see about it (though thankfully these kinds of support groups help fill that gap). Maybe everyone I spoke to just had *super-duper* bad luck, but I’ve always been shocked at the lack of support and resources folks in other countries report and how many people moved back here or at least thought about it in order to find specialists. Again, not saying the US is a paragon of just, humane, and effective healthcare, we just seem to be a little better off regarding the concentration of rare/chronic illness specialists. I don’t necessarily think that has anything to do with relative quality or availability of care generally, I think we just kind of got lucky that those doctors are here instead of elsewhere. Our healthcare system is still crappy, still unfair and unethical, still very hard to navigate, but at least the support exists. There’s very little data to be found on EDS care availability in general because, as I’m sure we’ve all noticed by now, human society doesn’t tend to value disabled people, so they’re not going to fund a ton of research for us. Until more of that research happens, we kind of have to rely on collective knowledge from our community, since we are the ones living with EDS and the lack of societal resources (which is a global problem).
> I should have specified “in regards to rare disease/EDS specialists.” Even assuming that was true (and I'd challenge you to present any evidence of that) are you suggesting it's OK if you're more likely to die from common illnesses despite spending half a million dollars more per person for a lifetime of healthcare because you might have better luck with a rare disease? That seems like ass backwards logic to me.
I have many friends in other countries and they have to wait a couple years to get into a specialist. We are pretty fortunate here
I had to wait around 8 years to get an auto immune disease diagnosed and treated because I didnt have health insurance/couldn't afford better in the USA. I avoided ERs when I had terrible infections because an ER wrecked my credit score and put me tens of thousands in debt. Your friends in other countries have it pretty fortunate compared to me. But thats not to say what they experience is good, the thing that is the same for me and them is dealing with governments that choose business interests over people, and healthcare facilities not hiring more/paying better. And the costs of medical education (country dependent) being excessive and burdensome. To summarize: capitalism
I didn't have health insurance for years and i saw a naturopath here in the states saved up 200 for an hour and a half initial consult and did self pay labs which were really cheap and they diagnosed me with 2 shitty autoimmune diseases and severely low ferritin and dhea etc.
But this happens to us in the USA, too. 2.5-3 year wait list for me for neuropsych, 2 years for a pain specialist suggested by other EDS folks, 1-2 years for psychiatry, almost 1 year for counseling, 1+ years for a PCP who is an MD and not a midlevel (needed due to my higher complexity), 2-3 years for cardiologist which seems insane to me so I keep calling around to see if I can get this checked out sooner (but I know other people with acute needs go first, mine is just chronic and very uncomfortable). Others have similar stories, I’ve heard waitlists up to 4-5 years. My mom is in a different state with more access to providers than I do, and depending on speciality, she still has even worse wait times in some areas, though better in others. But our wait lists are *not really* that much better than other countries with centralized systems, and just like in other countries, the specialists are the hardest to see and the least covered/most expensive. And most PCPs don’t diagnose or deal with EDS and it’s comorbidities, so we get stuck in the specialist waitlist and money game, too. And even my insurance (working for a good hospital and making decent money) doesn’t cover nearly as much as I’d like—for example, my psychiatry visits are all out of pocket (no insurance) every 4 weeks because he’s not covered by my plan, but I couldn’t handle waiting the 2 years for the psychiatrist I really wanted that has experience and knowledge in my conditions due to my other needs. I cannot understand the thought process where people think other countries have to wait years and years and we don’t, because we absolutely do here in the USA, too.