Feeling super depressed about the state of healthcare

Type 1 and LADA
1

I don’t want to make any kind of political statement, but lately I’ve just been kept up at night, feeling an intense sense of dread and dismay about the impending changes to the healthcare industry.

We are lucky that right now our healthcare is fabulous and we do not have big out-of-pocket expenses. But I know that no job lasts forever and that accidents can happen, job security for young adults is even more precarious and uncertain than it is for us, and I just look out into the long future for my son and see a lot to be worried about.

We would be able to pay for the out-of-pocket expenses of daily diabetes care assuming my son stays healthy, but that whole equation changes if he develops any kind of serious complications. And then I am heartsick thinking of all the other people with diabetes who will be facing increased complications, financial ruin, and death if the system changes as I fear.

I’m just wondering if others feel the same and if they have any backup/contingency plans other than “hope and pray not to get sick and to stay on good insurance through my employer?” There seems to be a lot of wisdom and insight in this community, and I wish there was some way to leverage this insight to actively protect our PWD. The obvious solutions (call your representative, fund advocacy, etc.) are so disheartening because they all involve buy-in from people in power and require filtering any ideas through our dysfunctional political system. Is there some way to make an end-run around all the obstacles to getting good care? Anyone have any amazing solutions sitting in their back pocket?

4 Likes
2

Hi Tia_G,

I’ve been very concerned about the possible changes to our healthcare system as well.

There are a few ways the system could affect diabetics drastically, but I think we’ll be alright (but pay more!) as long as we can’t be denied coverage due to a pre-existing condition.

As I understand it, the current solutions being tossed around involve an individual market, a high risk pool, and employer sponsored healthcare. If employer sponsored healthcare plans are not allowed to deny coverage to those with pre-existing conditions as long as they’ve had coverage for the 18 months prior (and the definition of coverage allows membership in the high risk pool), then I think we’ll manage alright. My main concern is if membership in the high risk pool might not be included in the “18 months prior” limitation. If we could move in and out of that pool between jobs, perhaps we’ll be alright (I hope I’m not being naive).

We’ll definitely end up paying more to enroll in the high risk pool though (than the individual market). If the out-of-pocket max is maintained, then our expenses (outside of premium) will at least be limited to 6,500 a person. While that is obviously a ton of money, it is, at least, an amount we can plan for.

I’m sorry if my post hasn’t been super encouraging. Hopefully knowing that you’re not alone can bring you some hope. I honestly don’t think there are any magical solutions out there. However, the affordable care act has changed the healthcare system in so many ways, I think we’ll be better off than we were before it was enacted.

3

All that they’re doing is repealing the ACA. They’re not replacing it with anything. They’ve had 8 years of opposition to ACA and haven’t bothered to do any work. They’re reckless and lack any empathy for the people whose lives will be effected/affected by this.

People who say it can’t get worse lack imagination and perspective.

2 Likes
4

You know, this is how I often think about things in my more frustrated moments, but I guess I have just been feeling lately that getting angry isn’t super productive, calling representatives who a) don’t represent me and b) have an ideological belief that government should not be involved in healthcare may make me feel better, but is not going change the country’s trajectory, and that I wish I could find something productive to do that didn’t depend on our political process.

I’ve been wondering about how people can group together to provide healthcare for marginalized groups within the existing legal framework that existed prior to ACA. I’ve been intrigued by Samaritan healthcare’s program, but the whole “religious prerequisite,” plus the exclusion of preexisting conditions, seems like a major limiting factor.

Because many people will slip through the cracks, and though my preferred solution would be the government just taking care of things, I suspect that’s not going to happen. I just feel like we need to have some feeling that we’re not powerless in the face of the government’s capriciousness.

5

First, I didn’t say it couldn’t get worse. I said that I think we’ll be better off than we were before the ACA was enacted because it has deeply affected the way our healthcare system works. Second, there have been proposals for replacing the act: http://rsc.walker.house.gov/#AHCRA

Do I think the proposal above is as good as the ACA? No. Do I think the ACA is a sustainable long term solution? No. I have a lot of opinions on what I think should be pursued, but none of those will be proposed by republican representatives.

Please don’t tell me I lack perspective when you know next to nothing about me.

6

I share your concern about the risks presented by planned changes to the ACA but from a little different perspective. Sorry for this long post but I figured I’d get my rambling thoughts out there. FYI I have been a small biz owner for decades (“buying” health insurance), a trustee for my current group insurance plan for 4 years and even after all that I still feel like I personally am getting ripped off by all 3 entities involved in the money part of health care: insurance companies, government, and drug companies.

I think it’s a shame that politicians are in control of how we meet our medical needs, basically keeping ourselves alive but everything we do the government feels like they must be involved. Even before the ACA the whole thing turned divisive and good solutions like HSA’s were demagogued etc. There is also the whole deal with lobbyists and “special interests”. Meanwhile the out of pocket cost and the premium we pay to meet our basic health related needs keeps going up (before and after the ACA) at an unacceptably fast rate.

Even with all the regulations, ACA, FDA, state insurance commissioners etc. we are not getting what we need even though we spend tremendous amounts of money. (combined we meaning patients, employers and the government at all levels). And we all have read the stories about rationing of test strips, networks with limited or no access to a decent endo, insulins not on the formulary, etc. We’ve also read about Medicare and many insurance companies not covering CGM’s.

I think the basic health related needs can be split in two: (a) day to day managing our diabetes, reducing long term risks associated with it, improving our quality of life etc. by our continual spending of money and time on insulin, test strips, CGM’s, endo appointments, glucagon, etc. and (b) “insurance” against larger health problems or events, including the full range from car accidents to cancer to D complications.

My personal wish is for the menu of options available for us to spend our money on “health care” to be expanded. If a company sold a decent high deductible catastrophic policy and that was all it covered at least we would get “insurance” by paying our premiums. The rest of it (item a above) needs a managed care approach where we pay in basically for the sole purpose of getting group buying power with associated discounts and we buy only the health care we need. For example, a managed care policy that covers all the usual things Type 1 diabetics spend money on, and tells us up front what’s covered.

Subsidies for people who can’t afford it can and should be handled separately (vouchers or tax credits). The best place for government to stay involved in micromanaging everything is to look at access and pricing and do whatever can be done with regulations to get prices under control, and of course to make sure insurers, drug companies etc. operate under some reasonable oversight and rules so they don’t gouge us. I also don’t like how Medicare, Medicaid and private insurance gouge doctors and bury them in red tape but have no idea how that can be fixed. The doctors are between a rock and a hard place right now and I suspect the ACA made it worse.

7

Honestly, I am completely open to anything that I think has a fighting chance of working. If someone wants to do all the number crunching (and let’s face it, the feasibility of any plan hinges on detailed numbers and projections – of future health care expenditure, demographic changes, incentives, enrollment, etc…) and then sell it to this congress and it is actually demonstrated to improve the lives of those who need it most in this country, then I am fully on board to try it, given that repeal seems to be a foregone conclusion. The problem is that all of the proposals I’ve seen so far enroll far fewer people than Obamacare and are projected to cost more.

There are a ton of ideas (like yours) that might conceivably work with some combination of variables, but probably have no political chance of passing. I guess I’m wondering if there are ways to improve the system in any meaningful way that doesn’t involve legislation.

8

The biggest disaster that could ever happen would be for ACA to be repealed before there is a comparable or better plan in place. Personally I was not thrilled with ACA but it had a lofty goal that I agreed with.

I don’t know whether to be depressed or hopeful. It depresses me to think that there could be people that will get hurt but I am hopeful that there won’t be.

What depresses me the most is that the new health care plan in our nation will be decided by one political ideology only, that was the problem of ACA. Neither of the political parties ideas on anything are always the best.

There is one thing that gives me hope, it will be political suicide for the current congress and president elect to bring a system that is not as good as or better. The idea that everyone should be able to afford health care is an idea that has been let out of the bottle with no way for it to be put back in.

Now what would really give me hope would be for the leaders of both parties to step forward and pledge to do this together…Wake up Gary you are only dreaming, we know that won’t happen.

3 Likes
9

humm…I’ve already decided I can no longer follow closely the political spin churning up the daily dirt…I am a 62 year old apparently invisible woman with a chronic illness…waaaaayyyy down on the list of concern for the emerging political powers. So I make the zombie apocalypse plan. If I can only afford over the counter insulin how can I make it work? That’s my next appt. with my CDE. Not that I’m ready to jump just yet - but I’ll continue to drive my numbers down till the hammer drops. Then I’m going in search of Dr off the insurance grid - they are out there.

1 Like
10

Yep, I have one of those doctors, and a visit costs me about $60.00, which my current insurance will reimburse about 1/3 the cost. I’m planning on asking her to set up a low-cost, no insurance plan for me as my BG control worsens (LADA, not currently on insulin). I figure I can get by on Metformin and/or Walmart insulin, diet, and exercise for long enough to let the current political and healthcare madness sort itself out. If it doesn’t sort itself out, then it hardly matters anyways. I’m not wealthy enough to self-fund my healthcare indefinitely.

1 Like
11

Who knows maybe the situation will improve and costs will come down. I can find just as good of case for optimism now as I ever could…

12

Historically, whenever major changes come to the healthcare system from the government (in the US), costs rise and rise precipitously. This is known. You can look it up. While I’m glad you’re feeling optimistic, your optimism isn’t based on any kind of historical reality.

If you’re right, fantastic! That will be great for people that can afford to spend money on healthcare. For a significant portion of the nation’s people, they’re going to lose no matter what the outcome (at least in the short term). It’s not unreasonable to be pessimistic at this point.

13

Completely disagree. Nobody is going to lose healthcare. Freak out and panic if it helps you cope. I am intrigued by your cash payment agreement with your doctor… that is a great way to keep costs down. I wish more opportunity for that presented itself…

14

I am 100% sure costs will not go down for us, as we already have great healthcare and meddling with it will only cause reductions in benefits or increases in copays. But for some small fraction of other people, there may be more uncertainty.

Also, I cling to some optimism that things will work out eventually, but there’s no denying that simply withdrawing the legal protections provided by the ACA without replacing them with anything will cause complete market chaos and that will not be good for individuals. And lest you say “they would never repeal without replace!” – well, I am completely skeptical that the band of Republicans currently in power is actually cohesive enough to come up with a plan, that is good, and that they all agree on and can get the needed 60 votes. But they are already rushing towards repeal, I think the plan is to do it so fast that the more hesitant Republicans don’t have time to think.

You seem very focused on costs, so here is something: the Congressional Budget Office estimates that, based on one of the plans proposed by Republicans in the past, deficits will rise, premiums will rise, and huge fractions of the population will lose healthcare coverage: https://www.cbo.gov/publication/50252
I’m just not sure how you can spin this as somehow leading to cost-cutting. Maybe in 10 or 15 years as what we expect from our healthcare system drops precipitously – but that’s a lot of time for PWDs to be shouldering the financial burden of their disease unaided.

You’ve often touted the reduction in costs as something that will help people with diabetes. And that may help with day-to-day care, but it’s not going to help people who land in the hospital with DKA or have heart disease, end-stage kidney disease – those are hugely expensive conditions no matter what cost-cutting methods you take, and as far as I can tell, none of the Republican plans would ensure that people with these conditions are protected.

2 Likes
15

Can you please explain your assertion that “nobody is going to lose healthcare” because I have actually looked at the types of plans being proposed and none actually ensure affordable insurance for people with pre-existing conditions.

1 Like
16

You can disagree all you like, but it’s based on a fantasy rather than reality or best estimates thereof. If you want some evidence, try the most recent CBO report on the estimated costs of repealing the ACA (with no replacement, which the GOP hasn’t floated yet). There is this bit of material:

Repealing the ACA also would affect the number of people with health insurance and their sources of coverage. CBO and JCT estimate that the number of nonelderly people who are uninsured would increase by about 19 million in 2016; by 22 million or 23 million in 2017, 2018, and 2019; and by about 24 million in all subsequent years through 2025

So, unless you have some evidence suggesting that is not the case, rather than belief, I’m sticking with the best estimates. Repealing the ACA with no replacement will cost the US an enormous amount of money and an enormous amount of people will lose their health insurance. Probably next year.

1 Like
17

Do you really think that the freely elected representatives in this country are going to pull insurance out from under the people who elected them? That’s not how you get reelected. I understand that they’re being portrayed as thoughtless partisan ideologues… but if nothing else they are interested in holding onto their power. The only way that’ll be possible is to ensure not a lot of the population feels screwed by their policies (they have a very recent history lesson in what happens to political parties when a significant portion of the population gets screwed by their policies). Yes Obamacare will be repealed. There will be an alternative. I hope it is an improvement.

Re the cbo— yeah they estimated the average family of 4 would see a $2500 reduction in their premiums too. It’s also due to their wizardry and expert non partisan guidance and estimates that this country is $20 trillion in debt. I don’t put a lot of faith in them.

18

Pessimism about the upcoming changes misses the point that for many individuals and families the current system does not meet their needs. Of course this discussion has devolved into predictions, optimistic vs pessimistic. I am on the optimistic side. People are not keeping an open mind but are getting suckered by all the doom and gloom in the press.

If the changes open up the market to allow insurers to sell a managed care policy tailored to diabetes they will still make money and we will save money and get better value for our insurance premiums. Or if the changes make insulin and CGM supplies cheaper we all win. This can be paired with Trump’s “insurance for everybody” if he means some kind of catastrophic insurance, subsidized or whatever.

The CBO did not score the replace plan because it has not been decided yet. The only downside I am pessimistic about is if real change like this will get watered down by the lobbyists and we end up with a Rube Goldberg mess similar to the current system. The ACA took something that needed to be simplified and added too many bells and whistles instead.

1 Like
19

@John58, I don’t want to be pessimistic but it does not inspire confidence when congress proposes laws preventing nonpartisan offices from calculating the cost of their proposals. To me, this is evidence they are not operating in good faith and doesn’t make me trust they have my interests at heart as a citizen.

You cannot do away with an individual mandate, keep the existing employer-based insurance model, eliminate protections for pre-existing conditions, lower the total cost of the system, and yet wind up with the same number of people insured against catastrophe. If you actually have a plan with some numbers, I would be so excited to see it – I would even forward it on to the relevant public officials to try to see it gain traction. But as far as i can tell it’s a math problem with a null solution.

3 Likes
20

Do you really think that the freely elected representatives in this country are going to pull insurance out from under the people who elected them?

In a word, yes.

I don’t think they’re “thoughtless” partisan ideologues, I think enough of them are committed to a set of beliefs about the proper role of government, the free market, and religious institutions and that makes it very hard for them to accept solutions that might actually be financially viable and popular with their constituents. I also think that politicians think they can spin the repeal and then delay the impact long enough to win mid-term elections. They may be wrong, but given that some people on ACA don’t realize it’s Obamacare, maybe they’re not. In any case I think there are decent odds that they are willing to take that chance.

3 Likes