For California Residents - GHPP and Medicare Questions

[Caszyrose]

Hi everyone,
My husband Gary and I are new to this forum, so thanks for having it! Does anyone have good answers about Medicare and GHPP? We're confused and need to make a decision very soon about whether or not to take parts B and D.

After working all of his life, Gary finally went on disability last year. He has taken GHPP (Genetically Handicapped Persons Program) for years, which covers most everything--no copays or Rx costs--for an annual fee. Gary just received a Medicare notification. He automatically gets part A for hospitalization, as an individual on permanent disability. However, he needs to decide whether to accept or decline part B - doctors, labs - and part D - meds. There were be a fee of about $1200-$1500/year for it and it looks like the only benefits to getting it would be that he would be covered out of state (GHPP only covers in-state) and perhaps, a home health nurse when he does home IVs (GHPP doesn't cover this). So we're leaning towards declining. However, if you need it down the line for any reason, you get penalized by 10% per year that you declined!

Have any of you crossed this bridge? So far we have not been able to nail down any clear answers from any of the people who are supposed to be available to help with these kinds of issues.
Thank you in advance. Wishing you all the best.
Lisa

 

[DjFunkyFife]

I have GHPP, and i can vouch for the 'Not Being Able To Nail Down Any Clear Answers'... to ANYTHING. Sometimes i think GHPP doesnt know what they cover and what they dont, or that it changes. GHPP was explained to me in a very unclear way when i signed up. I thought that they were complete insurance (i know not an actual insurance company, but took care of all the normal functions)... meaning that they take care of ALL health care needs of a person who signs up... then i was told no, they only take care of CF-related needs. Then, in clinic one time while i was there, the social worker called and asked what they cover. Their answer was "The Whole Client" whatever the heck that means. It SOUNDS like they cover everything completely, but, as the clinic social worker told me, there have been cases where they both did, and didnt cover non-cf related health issues for different clients. So go figure! Sorry, Rant over! (just wanted to vent about GHPP's confusing state of affairs.)

I would think one key to accepting or declining those extra parts of medicare would be if you plan to move. He'll have to get rid of GHPP anyways of you move. The state you go to may have a program that suits all his needs as well as GHPP. But i dont know. Also, how has his track record been with recieving labs, doctor visits and meds been in the past with GHPP? Mine's been flawless. Would Medicare get him access to a drug that GHPP doesnt cover? (like orkambi currently (which pisses me off) ) I cant really provide any information as to medicare, because i have not been offered it, and dont know the specifics. Has GHPP been his only source of health care up untill now? (And has it adequately suited his needs?) if so, why start paying for something you dont need to?

I'm not sure of those points will really help or not, but i hope so.

P.S. GHPP covered my last home IV... however, it was medicine that i started in the hospital, and finished at home. But it did have nurse visits and what-not, like normal home IV care that i've previously had. Maybe the 'starting-in-the-hospital' affected the approval.

 

[triples15]

Hello and WELCOME Lisa and Gary!!

So... I am not from California, but still want to add my 2 cents. I had a very similar experience a few years ago when I first become Medicare eligible. I was covered under my husband's employer's plan, so had to decide if it was worth taking Medicare B and D. I made COUNTLESS phone calls and no one could give me concrete answers to anything. Most of the time it seemed like I knew more about how things worked than they did.

I ended up taking the part B because I figured it would help pick up some of what our group plan didn't cover and make it worth the $104 premium every month. I researched the part D plans in my area and decided it wouldn't be much (or any) savings over our group plan's prescription plan, so I declined that..... Which leads me to the main thing I wanted to say. Medicare says the "penalty" for late enrollment is waived if you have other credible coverage at the time you decline it. The way I understood it, both from Medicare documents and the way it was it explained to me when calling Medicare, is that if you eventually enroll down the road you will not have to pay the penalty as long as you've had other insurance. So in your case if that's a big deciding factor I'd give Medicare a call and see if that's accurate.

So with that in mind if there is, in fact, no penalty in his case since he has GHHP, the main benefit to signing up at present would be for the home nursing. If you typically on average pay less than $1200 per year or so on home nursing, that would probably mean waiting on Medicare might make the most sense.

The other benefit would be the out-of-state coverage. Does GHHP cover him at least in an emergency? Or are just out of luck if you travel and he becomes ill? I suppose if you spend very much time yearly out-of-state, and they won't even cover emergencies that might make Medicare worth a second look.

Sorry, insurance is always such a confusing ordeal! I hope I helped at all!

Take care and best of luck,

Autumn 34 w/CF

 

[Caszyrose]

Thank you both for your quick responses and great food for thought. It seems like many on this forum are younger - 30s. Maybe it'll inspire someone to know that Gary is 57 and going strong. He worked full time and was a goalie in adult roller hockey until recently. He eats a ton of fruit and grains and meat, works out and loves life (though the time it takes for meds and treatments gets him down sometimes). It's so good to know we are not alone!

 

[triples15]

You are welcome!

Thanks for sharing about Gary! Sounds like he owes at least part of his longevity to his lifestyle. It's always encouraging to hear of "old" CFers. One of our active members is 75! And we have many 40s/50s/60 somethings. Amazing! Hopefully those of us living to that age will just keep getting higher and higher with all of the encouraging medical advancements.

Glad you found us, see you around!


Autumn

 

[rmotion]

I had GHPP for many years. THey covered everything related to CF. No Copays. Now my issue with regular insurance is that they charge me stupid Co-pays. I was looking to go back on GHPP for this reason. Now that Orikambi is available it seems GHPP does not cover this drug at this time. Big problem. It might change but who knows.