Needs advice on getting help with Medicare late fee

I've been on Federal Employee disability and SSDI for many years. For a long time I was on FEHB - Federal Employee Health Benefits - up until about a year and a half ago.

I gave up FEHB because the costs skyrocketed after Obamacare went into effect.

When I got approved for SSDI the year after the Fed disability went through, I was given the option of accepting Medicare, inc. Parts B & D. I couldn't afford both Parts B, D, etc and the Federal Employee insurance, so I took Part A only. Not only that, The US Office of Personnel Management has a rule where if you ever give up their coverage, no matter the reasons, you can never ever get it back.

I knew that when I dropped FEHB because at that point, it was my belief that I could finally sign up for Medicare Part B (D also) and a supplemental plan. However, there is one huge problem no one told me about until after I tried to get Parts B & D:

Medicare has a late signup penalty - 10 percent of the premium added to their monthly charge - for every year you go w/o it. So, we're talking hundreds of dollars I can't afford.

I have a care manager at Catholic Charities who reached out to insurance reps, and one of them told her that my FEHB coverage should have qualified me for a waiver of that late signup penalty. Well, Medicare refused to do so, even after I filed a Congressional complaint with my Rep, Claudia Tenney of NY.

My income is high enough that I don't qualify for help with paying that penalty.
My income is too low to afford the Medicaid spend-down.

In other words, I am royally screwed and have a hx of serious medical issues, inc. a borderline ovarian cancer, Type 2 Diabetes, diabetic retinopathy in both eyes, etc. I'm on my third hernia (the first one almost killed me, the second one was serious but not as bad as the first). The good news about this latest hernia is that it's too large to get strangulated like the 1st one. The bad news is I look pregnant, full-term, with twins on my left side. Doesn't look very good.

I have chronic stomach issues that need addressing by a G.I. doc but since I don't have Part B, I can't see any specialists. All I have for care at this time is a local nurse practitioner who takes me on a cash basis, but I don't know how long that will last. She's been pushing me to get covered but I've been doing all I can to obtain insurance.

Medicare Part A is for hospitalization only. So, if I have a heart attack, get hit by a car, etc, at least I will get care until after being discharged. I also have a financial aid arrangement at a local hospital but it doesn't cover everything and I still can't see specialists with it.

My blood sugar has been going out of control too.

So, with all of this going on, I thought the best thing to do is reach out to my Congresswoman, but that didn't work out. I wrote a letter to President Trump before he took office, been sending Tweets to him, our VP, etc, even media reps but to no avail. I sent snail mail letters to local and national media organisations, hoping someone would do a story about me.

To date only one local paper published my editorial. Have not heard back from anyone else.

What does it take to get help from those in authority (i.e. the Potus)?

Does anyone have suggestions about how to go national with this story? Millions of Americans are in the same boat as me. Btw, I never got an explanation as to why they have the late signup penalty with Medicare. It makes no sense.

For all those years I went w/o it, I was saving the gov't a ton of money. Now they want me to pay them as if I had won the lotto?

I'm at wit's end and am scared I will die young like my Mom did. She was 58 & died in '99 because of a massive heart attack. She didn't go through the issues I had. She just simply had a bad heart, and most likely high cholesterol. She was never a diabetic.

I would appreciate advice on how to get help. Thanks.

It seems to me that if you had other co-insurance, that means there is no penalty as long as you start the B within a certain time after you were uninsured. After that there was a penalty, but it only went for a predetermined amount of time.

Did you call your local Social Security office for an appointment and go talk to them about it?

The part D is a little more finicky. I get part D through the wife's place of employment after she retired. We still have to pay like seventy bucks a month for it but it does have some dental and medications added to the coverage.

originally posted by: rickymouse
It seems to me that if you had other co-insurance, that means there is no penalty as long as you start the B within a certain time after you were uninsured. After that there was a penalty, but it only went for a predetermined amount of time.

Did you call your local Social Security office for an appointment and go talk to them about it?

The part D is a little more finicky. I get part D through the wife's place of employment after she retired. We still have to pay like seventy bucks a month for it but it does have some dental and medications added to the coverage.

That's what we (meaning myself and my care manager) were told by an insurance rep. And another rep said the same thing during open season at a local supermarket. But Social Security told me otherwise and wouldn't even budge after I filed the Congressional.

a reply to: dianajune

That must be a recent change. I know that the wife only had so long to switch over when she retired and BCBS actually took care of it, but she had to fill out some paperwork on the net for Social Security herself. She retired at sixty two and they supplied insurance from work up to when she turned sixty five and then she now has the same as I have, part D and A and B come out of our social security checks.

I was falling apart eight years ago, the epilepsy drugs took a toll on me after the five years on them. Slowly but surely I got back to better health. I control my epilepsy with food choices and I control my Tachychardia now with a multimineral and by eliminating some foods from my diet. I do still have both of these and treating those is at direct odds with my hypoglycemia. I got to keep something with me all the time to make sure my sugar doesn't go too low and avoid too much nitrogen foods....the kind that triggers events is lunchmeats with nitrites and nitrates but even worse, I had to limit my favorite food....salads and anything green. But I have sort of the opposite of diabetes although I can't eat too much sugars or carbs at a time because I have reactive hypoglycemia, I make too much insulin.

I take a multimineral every day and no medicines at all. My wife has dropped off most of her medicines now, not needing them anymore but still takes a waterpill/alpha blocker. My back still bothers me sometimes, I take an occasional bromelain pill or one regular aspirin when needed. A bottle of each lasts a year.

Identifying which food intolerances I had took a few years after I learned how to find out which ones I am intolerant to. Strangely, they are foods I actually started to eat more of because people say they are good for you.

Us Finns are a little backwards with things. I guess there was a reason most of my older relatives avoided green things. Finns are supposed to eat Pasties and roast and potatoes with carrots I suppose.

originally posted by: rickymouse
a reply to: dianajune

That must be a recent change. I know that the wife only had so long to switch over when she retired and BCBS actually took care of it, but she had to fill out some paperwork on the net for Social Security herself. She retired at sixty two and they supplied insurance from work up to when she turned sixty five and then she now has the same as I have, part D and A and B come out of our social security checks.

I was falling apart eight years ago, the epilepsy drugs took a toll on me after the five years on them. Slowly but surely I got back to better health. I control my epilepsy with food choices and I control my Tachychardia now with a multimineral and by eliminating some foods from my diet. I do still have both of these and treating those is at direct odds with my hypoglycemia. I got to keep something with me all the time to make sure my sugar doesn't go too low and avoid too much nitrogen foods....the kind that triggers events is lunchmeats with nitrites and nitrates but even worse, I had to limit my favorite food....salads and anything green. But I have sort of the opposite of diabetes although I can't eat too much sugars or carbs at a time because I have reactive hypoglycemia, I make too much insulin.

I take a multimineral every day and no medicines at all. My wife has dropped off most of her medicines now, not needing them anymore but still takes a waterpill/alpha blocker. My back still bothers me sometimes, I take an occasional bromelain pill or one regular aspirin when needed. A bottle of each lasts a year.

Identifying which food intolerances I had took a few years after I learned how to find out which ones I am intolerant to. Strangely, they are foods I actually started to eat more of because people say they are good for you.

Us Finns are a little backwards with things. I guess there was a reason most of my older relatives avoided green things. Finns are supposed to eat Pasties and roast and potatoes with carrots I suppose.

I don't know if this is a recent change, but even so - the Federal government should make sure recipients are adequately notified, and in hardship cases this fee should get an automatic waiver at the very least. It would be best if they stopped charging for it altogether.

I'm sorry to hear about what you went through. With reactive hypoglycemia, does that mean if you eat too many carbs you get lows?

I can't remember the last time I had a low. As for morning blood sugar, it's been over 200 lately, sometimes 300+. That's not good. It started climbing not long after I was stupid enough to pop a blister. My NP would scold me if she knew about it. Anyway, it's just about healed but the sugar is still high. Maybe it's stress?

I'm still on a water pill but don't have to take it as much as I used to. This is a correction I made on my own, and during my last visit with that NP, she said she thought my legs looked better.

Years ago when another doctor put me on that stuff I was up to 60mg furosemide a day. And you could see my legs "sloshing" when I walked. Funny that, my fluid retention has improved but my blood sugar, even though I have started to cut certain things out of my diet, has gotten worse.

Maybe it's the stress and the infected blister I had....don't know, I just wish I could get insured again. It would fix a whole lot of things!

I love pot roast & potatoes too, btw!

a reply to: dianajune

Try taking a multimineral pill, make sure it has some molybdenum, selenium, manganese, and chromium in it, a little copper too. If you increase urination, it often washes out those minerals. Metformin also can cause a deficiency in folate, you may need to take a small methyl folate supplement and maybe some B12. The folic acid might not work, the pathway needed to restore what you need may not be activated by folic acid. I do not know if you take metformin but many people with diabetes do. I do not know why the doctors do not prescribe bioactive forms of folate with the metformin. Metformin can give you the runs and I guess that is why it is a problem for many people.

originally posted by: rickymouse
a reply to: dianajune

Try taking a multimineral pill, make sure it has some molybdenum, selenium, manganese, and chromium in it, a little copper too. If you increase urination, it often washes out those minerals. Metformin also can cause a deficiency in folate, you may need to take a small methyl folate supplement and maybe some B12. The folic acid might not work, the pathway needed to restore what you need may not be activated by folic acid. I do not know if you take metformin but many people with diabetes do. I do not know why the doctors do not prescribe bioactive forms of folate with the metformin. Metformin can give you the runs and I guess that is why it is a problem for many people.

I'll look for this next time I go to the pharmacy, which w/b Monday. Btw, I am on Metformin - 1000mg 2x daily. And glimiperide as I ran out of the free Januvia and still haven't gotten the paperwork back from that NP for refills.

I've had IBS for years & it got worse after the Metformin but even worse after that first hernia surgery. About 10cm of my small intestine was removed. And I now have diverticulosis too. I like salad but it can make me very sick. Nuts too, which aren't too bad for diabetics can make me ill.

My NP doesn't know I put myself back on Glimiperide. I had one refill left and had it filled when I realized it would be hard to get the paperwork for the free refill from the pharma co (Merck?). Sometimes I wonder if she wants me to get so irritated that I will leave her practice. At first she made it seem like I was lying about the problems I've been having with getting covered. She even met with my care manager about this.

a reply to: dianajune

Do you have the runs with the Metformin...Oh, yeah, you have IBS. So you might need the Folate and B12 supplement. Maybe a good quality multivitimin with real methyl b12 and real folate might help a bit, ask your doctor about that.

I was taking methylfolate for about a month straight and also b12. I started getting symptoms of too much so now I take them once in a while and feel good. One to two times a week is all I need.

I also have all kinds of genetics that contribute to low methylation, eighteen reds and twelve yellows. But Metformin can cause levels of Folate to fall and because folate is required for B12 to work right, it could lead to a deficiency in bioactive b12.

It doesn't hurt to try, the MethylB12 seems more calming to me, I take a spray at night and I sleep better, I got the kind you spray in your mouth and it tastes like mixed betties. That thirteen dollar bottle lasts me two months or more.

You might do well with a B-right B complex too, they have the more bioactive versions of b vitamins.

Talk to your doctor about this.

a reply to: rickymouse

I've had IBS for years. Between the surgery I had in '09 and the Metformin, I've had to learn how certain foods will cause flareups and which ones don't. It's not always easy to tell because I can eat something one day and it won't bother me. But the next day or week it would.

I'll discuss this with my NP next time I see her.

Getting back to the Medicare late fee - would the President have the authority to waive that?

Heck, Obama was a law unto himself. And Presidents can grant pardons. Why not this too???

originally posted by: dianajune
a reply to: rickymouse

I've had IBS for years. Between the surgery I had in '09 and the Metformin, I've had to learn how certain foods will cause flareups and which ones don't. It's not always easy to tell because I can eat something one day and it won't bother me. But the next day or week it would.

I'll discuss this with my NP next time I see her.

Getting back to the Medicare late fee - would the President have the authority to waive that?

Heck, Obama was a law unto himself. And Presidents can grant pardons. Why not this too???

I doubt if your call or e-mail would even be answered. I suppose you could try but you will probably get a brushoff. I e-mailed my Senator one day to discuss an issue and he did get back to me. I knew him though, I have met him a few times and talked to him and we have a couple of common friends who were politicians. I don't have any political pull at all anymore, I know I would just get a computer generated thank you.

One of my friends suggested I try out Fidelis. I had a bad feeling about this but checked it out anyway. So I went to their website and was immediately directed to the NY State of Health.

Somehow I knew this wouldn't work out. I was right.

After jumping through a bunch of hoops during a lengthy telephone interview, I was informed that I was not eligible for help through the Marketplace. The woman asked if I could go to the local DSS and ask for help with paying the cost of my insurance. I told her that I went through the county's Office of the Aging and was told my income was just over the limit for getting help, whether it would be for that late signup penalty for Medicare or something else.

I told her the spend-down for Medicaid was too high.

So I'm back to square one. The next time one of my "friends" - no matter how well-intentioned - suggests I "try again" - I will freaking scream.

The definition of insanity is doing the same thing repeatedly and expecting a different result. Like with this.

There is no hope for me at all. I am in desperate need of a miracle. My care mgr from Catholic Charities seems to think I should grab the money for the late fee and just pay it. But I can't. I would have to go on a permanent fast. She can't get it through her thick skull that money does NOT grow on trees.

What I'd like to do at this point is simply give up. I just don't have the strength to fight a very corrupt system. The only break I would get re. healthcare is go to Canada, Britain or some other country and use their healthcare system. Or I could break the law and try to stay in jail or prison as long as possible to take advantage of their medical care.

But I'm being facetious. I can't believe that I've been handed a death sentence, so to speak, by Washington because:

1. I was not informed of the late fee
2. I am too poor to afford it.

At this point the best thing to do would be to give up what little healthcare I have (I see a NP in town on a cash basis) and let the chips fall where they may. I have no strength to keep fighting this stinking system and the struggle has been taxing on my health - mental and physical.

Who's to say my blood sugar won't get better after I stop seeing that NP and stop the meds? The stress is taking a toll on me.

No more doctors, no more medicine, no more stress from fighting the very a$$holes who have the power to help but choose not to (i.e. pols in D.C., etc

I guess this wasn't much of an update. Just a rant from a very stressed out disabled woman in her mid-50's, who, just a short time ago, was told by a neighbor (who didn't know my age until about an hour ago) that she thought I was 65-70. I'm going to be 55 this Fall.

It's amazing what stress does to a person.

Thanks for listening.