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Radiation Cystitis/Insurance dilemma

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Posted 7/15/2020 12:52 PM (GMT 0)
The doctor said the good news and the bad news is that bleeding after a bm is being caused by radiation cystitis. It's good news because there is no tumor. It's bad news because it's permanent, incurable, with very limited treatment options, if any. Exertion makes it worse. Randy's job is very physical, and is apparently contributing to the problem. If it gets worse, he'll have to stop working. The docs are saying he should consider retirement at 62, or look for another line of work. (Early retirement (62) means SS pays next to nothing - some retirement savings, but not enough to deal with medical costs.) As with most, his insurance is tied to his job. This leaves me terrified. To add him to my work insurance is cost prohibitive (very high deductible, and so many coverage restrictions). Medicare doesn't kick in until 65. What he does now is what he knows how to do, so another career field doesn't seem likely.

Right now, Randy is on the EMBARK trial, and doing well, as to his cancer. The trial is set to end in a year, so the treatments covered by the trial will then be the responsibility of our insurance and us. There is absolutely no way we can cover those cost without insurance (who could?), and no way to cover insurance. The trial drug (Enzalutamide) is not on the "approved" list of drugs with my work insurance company, at all. So even if we found a way to cover the premiums, I'm not sure he could continue his current course of treatment. Any of you insurance-knowledgeable guys out there have any ideas?
Posted 7/15/2020 2:55 PM (GMT 0)
Hi friends. Sorry to see the continued problems.

If he loses his job he can continue his present coverage (at increased cost) for 18 months under COBRA. At that time he would either join your coverage or get individual coverage. Typically, your employer sponsored plan would be better than an individual plan, but you can make that assessment at that time. In either case, it would then be a fairly short time to Medicare. If the condition and his PCa disables him to the extent of Social Security disability, then he would get Medicare after two years. But, the extended time frame of getting a disability affirmation would likely be years And by then he would already be on Medicare at age 65.

Obviously, it is best that he continues to work. He should be discussing work related changes that can accommodate his conditions under the ADA. In the short term of then next few years, coverage is not a concern, but cost of coverage is. I suggest he do what can be done to preserve his employment as long as is reasonably possible.

Best wishes with treatment and the trial. The two of you are very deserving of some relief.
Posted 7/15/2020 8:27 PM (GMT 0)
Thanks, JNF. Randy's blood count is "borderline". If it continues to bleed and get worse, keeping his job might not be an option. As for asking for ADA allowances, it's a small business owned by a group of "good ole boys" who would, without a doubt find a reason to let him go should he ask for those allowances. Georgia being a "right to work" state, there are very few (none?) protections in place. He's worked there for 10 years, and they have, for the most part been understanding, but there have been folks in the past who've asked for ADA allowances, and they weren't there after a while. It's just too costly. Most of what you posted is what I already knew. COBRA is more expensive than adding him to my insurance. Sorry to be crass, but I'm afraid we're just screwed. I cry every time I think about it. We've both worked our entire lives, paid taxes, raised great kids who are now contributing members of society, gave back to our community...all the things "good Americans" should do, and now we're facing financial ruin at best, and lack of medical care at worst. All because he had the audacity to get sick before he turned 65.
Posted 7/15/2020 8:38 PM (GMT 0)
With regard to the future expense of the trial drug itself, if he is still getting benefit at the end of the trial, I would speak with the drug comany. I wouldn't be surprised if they offer financial assistance, especially in these times.

Djin
Posted 7/15/2020 9:18 PM (GMT 0)
Djin, I've thought of that. It's worth a try....
Posted 7/16/2020 2:57 AM (GMT 0)
If he qualifies for permanent disability he qualifies for Medicare after 24 months regardless of age.

https://www.medicare.gov/getting-medicare-if-you-have-a-disability
Posted 7/16/2020 11:08 AM (GMT 0)
Stephen, please note I addressed the Social Security disability and Medicare issue. From a practical standpoint it is difficult to see him getting Medicare before his regular age 65. He can’t apply now for social security because he is working. Even if he qualifies for the “compassionate determination” process due to the state of his PCa (if it qualifies) he still has to first leave his job due to the inability to work before he can file. As he has stated he wants and needs to continue working. Under the best of circumstances, it could be at least 6 months to get disability plus the 24 months before Medicare due to disability. Do the math, puts him within months of his age 65, so it does little or nothing to alleviate the current issue.

I would try to tough out the work as long as possible. If his condition renders him unable and he slows down and the business owners drop him, he could possibly take legal action for wrongful termination, ADA discrimination, age discrimination, etc. I would consider meeting with an expert attorney in this area to seek advice. Just because Georgia is a “right to work” state it doesn’t mean that the worker has no protection or recourse. They are still subject to the federal and state discrimination rules.
Posted 7/17/2020 4:00 AM (GMT 0)
Yeah I didnt know how old your husband was.

I was searching around and I found this

https://www.healthinsurance.org/faqs/what-is-the-acas-catastrophic-plan-and-who-is-eligible/

There might be something to this. You can get an exemption for being over 30. It mentions talking to an insurance broker. It may be a high deductible situation but if the premiums are reasonable he could switch jobs to something less physical....even P/T....just to cover the premium/cost until he reaches 65.

https://
Posted 7/18/2020 3:06 AM (GMT 0)
Is Obama care an option? I went that route for couple of years before I was eligible for Medicare, I am in California.
Posted 7/18/2020 11:24 AM (GMT 0)
Individual insurance is always an option, but in my experience, I have never seen a situation where an individual plan was better than a group plan when measuring total costs of premiums, co-insurance, deductibles and provider networks. So usually either COBRA or going on as a dependent is typically better. And remember that if you are eligible for a group plan that is subsidized by an employer, Either as an employee or dependent, you are not eligible for any tax subsidy for an individual plan under the PPACA, so called Obamacare.
Posted 7/20/2020 12:43 PM (GMT 0)
JNF, I looked at ACA Plans, but as you said, no subsidies, so it as close to the same price as adding him as a dependent with higher(hard to believe) deductibles and copays than my work plan. If we were very poor (we're not), we could get help. If we were very rich, we wouldn't need help. But there is nothing for the middle class. Don't get sick, and if you do, good luck!
Posted 7/20/2020 3:27 PM (GMT 0)
Randy, something just occurred to me that may be inapplicable but you might check. I retired early and my employer insurance had a bridge plan that tied me to that insurance until I was 65. It was more expensive than what I was paying but not nearly as expensive as COBRA. Have you checked with his employer's HR department and/or his current insurance plan to see if there is anything like this available?

Jim
Posted 7/20/2020 4:39 PM (GMT 0)
Thank you Tudpock. I'll check on that.
Posted 7/20/2020 4:56 PM (GMT 0)
RJ - As far as drug costs goes, do not hesitate to apply for relief from the manufacturer and appeal any rejections. My wife is getting treated at the University and they put in the application for her expensive drug even though we thought we would never qualify for anything on Medicare (government programs are different that regular insurance with drugs). They said to stay after it regardless of income, etc. They rejected the initial application so we appealed and sent them her last W-2 and copy of first two pages of tax return based on a phone call. They approved the application and now she gets a year of $12K/mo meds directly from them at no cost for a year.

There is absolutely no way I would have guessed that we would qualify for any assistance but we did somehow. They did not look at assets just income which was much reduced from working years although the taxable income was still fairly high for some other non-payroll reasons.
Posted 7/26/2020 2:38 PM (GMT 0)
RandyJoe, I can get you connected to Sonny regarding treatment. I spoke with him last evening. Please send me an email or call. I also sent you an email, but haven’t heard back.

Thanks
Posted 7/27/2020 2:24 AM (GMT 0)
Randy Joe,
I replied to your post about Hyperbaric Oxygen therapy. My doctor told me that my bladder was the worst he had ever seen in 15 years of practice due to radiation cystitis. I had been bleeding every time I had a hard BM and sometimes randomly. It all came to a head when I was visiting my sister in Houston. I started bleeding at night and couldn't urinate. I went to the ER the next morning. Long story short, I had a golf ball sized blood clot blocking the passage of urine.

I underwent two bladder surgeries, the second after the first didn't solve the problem. I had a hell of a time with catheters, scopes. My doctor got me into hyperbaric oxygen therapy. I had about 25 treatments. I have not had any blood in my urine for over 9 months now, so it seems to have worked.
Posted 7/27/2020 1:01 PM (GMT 0)
Thanks, Sparky. That's encouraging. The plan is to push for it sooner rather than later.
Posted 7/27/2020 2:01 PM (GMT 0)
Randy Joe and Donna please give me a call or email so I can get you connected with Sonny. Thanks.
Posted 7/27/2020 3:24 PM (GMT 0)
Randy Joe, I just sent you an email with my email and contact telephone number. Look forward to discussing HBOT with you,

Sonny
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