POZ Community Forums
Main Forums => Living With HIV => Topic started by: a2z on June 24, 2009, 10:37:16 pm
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I worked for a place that had time limits for contractors and had to leave my old job in January, so I kept my health insurance through COBRA. As many of you know, that can take some time to kick in.. .fortunately I had meds to get me through mid-April.
By early April I hadn't resolved my COBRA payment, where it was supposed to go to, etc. I knew I had time before the coverage lapsed, but what I didn't realize is that when I went to the pharmacy in early April, they were NOT going to cover my meds at that time. It took until May to get the COBRA issues/payment resolved so that I could get my meds from the pharmacy.
No official lapse in coverage, so I was partially grateful.
But it meant a very unplanned break in taking my meds. I restarted meds about a month ago, and had the blood test after 3 weeks.
While my T-cells, CD4/CD8 % were way down, and viral load had climbed to 1150... well I figured it could have been worse. Though oddly, those are around the numbers I guessed. I asked the doctor about resistance and he thought that while he couldn't make any statement for sure yet, it's very possible I won't have to switch medications providing I can keep my insurance (I'm now unemployed!!!)
So if I can keep adherent and get re-employed soon, which I think will happen, I have a good shot at keeping this first combination. The Reyataz, Norvir, Truvada hasn't been perfect, but it has worked out overall.
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Maybe it's fine, I guess it's hard to know until you restart, is that what the doctor said?
Can a resistance test be done with that viral load?
I did not know there was a lapse when one went on COBRA, was that in your particular situation or does that happen in general?
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Maybe it's fine, I guess it's hard to know until you restart, is that what the doctor said?
Can a resistance test be done with that viral load?
I did not know there was a lapse when one went on COBRA, was that in your particular situation or does that happen in general?
It was a bit of both...I couldn't get the Cobra letter until April...which is the unusual part. It usually doesn't take that long. But I guess it's normal practice to freeze benefits until that first one is paid.
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Glad things are temporarily sorted. Good luck with your job search and I hope for much continued, uninterrupted treatment success.
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Well kudos for keeping a brave face on. I would have panicked big time.
What a nasty situation - drugs that keep us healthy can be withheld for one reason or another.
It seems to me that the public doesn't understand the difference between the relatively easy ride many people on HAART have, because they are on HAART, and how a few weeks can screw it up.
I don't know much about medication for other chronci diseases, however. How long could a diabetic go without their drugs?
I am curious. Wasn't there ANY stop gap emergency solution for you to avoid that drug interruption? How many people got involved to help find a solution.
What do American HIV specialist doctors say, when their patients confront them with an impending drug interruption due to insurance/finance. Shrug of shoulders?? Regrets?
I almost feel like I HAVE to get a reserve of several months, at least, to feel safe... Since I pretty much always had viral loads in the millions, would that mean I would shoot right back up after a week or two without drugs?
This topic makes me really uncomfortable.
I hope it turns out fine for you!
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Well kudos for keeping a brave face on. I would have panicked big time.
What a nasty situation - drugs that keep us healthy can be withheld for one reason or another.
I don't know about a brave face, it was more of "Hey what could I do?" I had misread the situation, been misquoted the COBRA bill (which thankfully I had until May to pay, but had to make the FULL payment) and my financial reserves got creamed in January/February and two week medicine reserve wasn't enough to get me through 7 weeks of financial hell.
I would worry less about medicine reserves than a financial cushion that can pay 3 months of COBRA/Medicine "in case of."
Things are still tough now, but with the stimulus COBRA reduction finally applying, even on unmemployment, I'm managing to get that paid.
Next time, I'll know better.
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I don't know much about medication for other chronci diseases, however. How long could a diabetic go without their drugs?
Diabetics need insulin every day, sometimes several times a day but the thing is, insulin is very inexpensive, especially compared to HAART.
I filled my Rx and have not yet started because I want to have a decent supply, at least 3 weeks. And after that I will try to renew the Rx as early as possible every month which should give me extra doses that will add up. It's definitely one of the scariest things about HIV nowadays: access to the super expensive meds.
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Dunno, I've had plenty of tenuous financial environments in the past 8 years -- losing two jobs, going on COBRA, filing for disability, wait period for Medicare, moving from one state to another -- and never once was there any break where I went without medication. In fact, knowing my complicated resistance profile, my current HIV doctor has made it clear if I encounter any problem either with a pharmacy or case manager I'm to come directly to him without delay, but I've never had to do that. I've always kept ~month of extra meds but I've actually never had to dip into that.
Not trying to diminish what the OP went through of course, but just trying to add some context for the worriers. However, I would ask the OP if he dealt with a case manager at all during this to see if there was something that he wasn't considering to prevent what happened to him.
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Miss P: Your input with this (as with other things) is invaluable. It's inspiring to know that you have been able to have uninterrupted access to the meds for such a long time. Meaning, it can be achieved.
For me, I now have insurance and am aware of COBRA when and if that goes away so when I read the OP saying that there can be a lapse in coverage between the two, that kind of scared me, I always assumed it was an "automatic" thing where one coverage flowed into the next. I guess the lesson here is that it can be a seamless transition but for those of us with HIV, we probably need to be extra vigilant about it.
Worth noting: For those with COBRA (such as the OP) or those who might have to use COBRA some day, they can, and many times will, drop you like a lead balloon if you are so much as one day late with any of the COBRA payments, so stay on top of that!
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No doubt it can be a very worrisome situation -- when I lost my job and went on COBRA my employer knew I had HIV and could not afford any lapse in coverage, so yes it's invaluable to be vigilant with the subject. I guess if there's any time to disclose this issue that's the time to do so.
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No doubt it can be a very worrisome situation -- when I lost my job and went on COBRA my employer knew I had HIV and could not afford any lapse in coverage, so yes it's invaluable to be vigilant with the subject. I guess if there's any time to disclose this issue that's the time to do so.
When you say they could not afford any lapse in coverage is that because the ex-employer has to pay extra if the individual is late in paying?
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When you say they could not afford any lapse in coverage is that because the ex-employer has to pay extra if the individual is late in paying?
No, I meant they realized that I could not afford it -- not "afford" in a financial context but in "allow" or "spare". I'm not sure what they would have done if I was ever late in making a payment, but I was never late. Plus, though I didn't realize it until almost too late, I could have applied to some entity and had the state of New York pay my COBRA costs if I remember correctly. That's one reason that I advocate going to an ASO as soon as your financial situation changes. And if you live in a major metro area you can also probably locate a public clinic that will provide treatment without regards to your ability to pay.
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Plus though I didn't realize it until almost too late, I could have applied to some entity and had the state of New York pay my COBRA costs if I remember correctly. That's one reason that I advocate going to an ASO as soon as your financial situation changes
I had the same situation, sort of. I did go to an ASO and they never told me about my state (California) paying the COBRA premium for me. There was also an HIV counselor at my hospital who should have know better and advised me about the program. (I say 'should have' because this is Kaiser I'm talking about.)
It was only long after my insurance lapsed and I was on Medicare did I realize what I had lost out on. Under normal circumstances I would have asked a few more questions at the beginning but I was in the deep throes of PCP recovery and was not running on all cylinders.
I'm afraid now that particular program might be coming to an end, at least here in California. ADAP (including Ryan White) is taking a $55m hit and everything is on the table....but the meds.
robt
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Miss P: Your input with this (as with other things) is invaluable. It's inspiring to know that you have been able to have uninterrupted access to the meds for such a long time. Meaning, it can be achieved.
Yes, and in my case,the lapse was a lapse because of the combination of getting signed up (it took weeks to get the paperwork), the insurance company not wanting to get screwed for $7K of HIV meds, etc.
It's not a "lapse" in the same sense as a formal break in coverage.
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Hi a2z,
It's a shame you didn't let us know when this was happening. There have been times here in the past where someone, for whatever reason, ran out of meds. Quite a few times other members were able to send some of their own extra meds, thereby providing a stop-gap. It's something for all of us to keep in mind. It never hurts to ask!
I've got my fingers crossed for you that you haven't developed any resistance. Keep us posted, ok?
Ann
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Hi a2z,
It's a shame you didn't let us know when this was happening. There have been times here in the past where someone, for whatever reason, ran out of meds. Quite a few times other members were able to send some of their own extra meds, thereby providing a stop-gap. It's something for all of us to keep in mind. It never hurts to ask!
I've got my fingers crossed for you that you haven't developed any resistance. Keep us posted, ok?
Ann
Thanks and that's good to know. I did almost consider saying something but I realized this really was a situation where I failed to prepare and do the proper pre-work on understanding how this COBRA transition will work with HIV medicines. (Or for that matter, any other prescription.)
I think it will be okay. It was strange being off meds for a month-plus, I kept going to the fridge for the norvir and went "Oh, yeah."
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It's definitely one of the scariest things about HIV nowadays: access to the super expensive meds.
Yup, that's my biggest fear...Imagine a new global war and HIV medicines are no longer shipped to us. :'(
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I worry about Martians.
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I did not know there was a lapse when one went on COBRA, was that in your particular situation or does that happen in general?
folks: there is NO lapse when you go on COBRA if you don't wait on those silly letters that go out way too late. I can say this because i've done it 4 or 5 times now. You speak with HR and then with the insurer to arrange ASAP how to make your first premium payment. This way you do everything in your power to have SEAMLESS coverage, not "reinstated" coverage, which is just fine unless you happen to be the patient.
8) -megasept
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folks: there is NO lapse when you go on COBRA if you don't wait on those silly letters that go out way too late. I can say this because i've done it 4 or 5 times now. You speak with HR and then with the insurer to arrange ASAP how to make your first premium payment. This way you do everything in your power to have SEAMLESS coverage, not "reinstated" coverage, which is just fine unless you happen to be the patient.
8) -megasept
Thanks Megasept ;)
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Yup, that's my biggest fear...Imagine a new global war and HIV medicines are no longer shipped to us. :'(
I worry about Martians.
Geeze, Philly, if you lived in Eastern Europe like Elf does, maybe you'd be worried about continued access to the meds too. ::)
Ann
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folks: there is NO lapse when you go on COBRA if you don't wait on those silly letters that go out way too late. I can say this because i've done it 4 or 5 times now. You speak with HR and then with the insurer to arrange ASAP how to make your first premium payment. This way you do everything in your power to have SEAMLESS coverage, not "reinstated" coverage, which is just fine unless you happen to be the patient.
8) -megasept
My HR Department made me wait on the sillly letters. Next time, I'll know.
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megasept and a2z (or anyone who knows): what are these letters that you guys are referring to? I have insurance but will likely be going on COBRA at some point so I want to make sure I do it right. Thanks, I really appreciate it!
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Human Resources.
Of course, if you work in a small firm you won't have such a thing, but there will be someone like an office manager handling this issue.
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The law (COBRA) requires that you receive written notice of your rights to sign up for extended coverage. The legal requirement runs from the time you lose coverage so the letters are sent out in arrears and are not the timeliest way to sign up.
But nowadays most big and mid-sized firms have benefits information on a website and if you click around you can probably find all the forms and procedures there. Look for something that says something like "When you leave your employment"
Or, if fired, ask who you should speak to about signing up
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Everyone: WOW. So many good questions and some good suggestions too. Ann, thanks---as always--- for putting it all in perspective. Now for the nitty-gritty for US residents who will or may need to go on COBRA...a Federal law that allows people to keep coverage by self-paying premiums under something similar to your group (employer-based) plan.
WE NEED:
---CONTINUED (seamless) coverage, not after the fact don't-worry-about-it "reinstatement" of benefits
---No (illegal) coverage denial, 6 months wait, for "pre-existing conditions" ie HIV
---Peace of Mind
DO THIS RIGHT AND YOU WILL ACHIEVE THE 3 GOALS ABOVE.
Is "going on COBRA easy?" Sometimes.
"If I am entitled to COBRA will I be able to get it?" ABSOLUTELY.
First get a handle on the dates:
On what exact date does your GROUP COVERAGE end? (Ask both HR and Insurer). If you're in California you'll go on CAL COBRA after COBRA (PM me on this). Obviously COBRA needs to start the day after your group coverage ends.
The HR thing is just if you have one (I usually didn't) to advise you on the dates, not much else. Your work is all targeted ON YOUR INSURER.
The LETTER is sometimes called your HIPPA letter. I'd suggest you call and ask real nicely for your insurer to issue you one "early because I'm a worry-wort". DON"T FREAK if they tell you to wait 6 months for "pre-existing condition." THEY ARE WRONG! It happened to me 3 times! It was easy to fix. THE LETTER (it's content, not the actual document), is YOUR PROTECTION.
Pay your COBRA premium as early as allowed; DON't WAIT ON BILLING. In the past, sometimes i wasn't billed for COBRA ever, other times (like now) I am issued a bill. PAY INSURANCE PREMIUMS BEFORE THEY ARE DUE, preferably over a week early. IS THAT FAIR? NO, but take my word, it's good practice.
KEEP NOTES BECAUSE THEY WILL MISINFORM YOU/MAKE MISTAKES/CHASTISE YOU WHEN YOU DO EXACTLY AS THEY SAY (BECAUSE THEY DON'T KNOW THEIR OWN PROCEDURES):
Always write down everything that happens:
"2/21/09, Beth, Elligibility, Ext 3749347, "cobra ammt $1,000,000.00 due _____ send to _________. New card arrives _____________." If i am transfered to five people i have notes on all 5 people.
COBRA is like pretend GROUP COVERAGE, only it's not. Annoying.
COBRA is no protection against premium increases; if the insurer sticks it to your old group plan, they stick it to you too! And they will! (More on this later).
GENERAL ADVICE: The insurer exists to MAKE PROFITS. Some reps are cool and a few are well-informed, but they aren't your friends. BE YOUR OWN ADVOCATE. If you really have a hard time being assertive or debating see if someone can't be your advocate, like a spouse, or sibling. Meke the phone calls on speaker phones. Make sure the rep knows you're writing down their names, ID info, and contact info (extensions); they might be more careful and, unfortunately, you may really need this info a few days or weeks later.
If you're not assertive you will have more headaches, be denied meds when you have coverage, etc. FIGHT BACK whenever necessary.
THIS WHAT I KNOW, AND REMEMBER concerning "going on COBRA" many times starting years ago. If anyone knows anything different post it here and PM me.
POLITICAL 2 CENTS: I do not accept this "health system" nor do i like COBRA, nor CAL COBRA. I do not accept health "reform" without a public option that would allow me to escape my insurer's clutches. LOBBY FOR A PUBLIC option by writing the White House THIS WEEK! Don't let the King of Pop's death or a silly Stonewall Dinner in DC allow us to fall asleep at the wheel! We deserve better! This Obama volunteer says "fight for it!" 8) -megasept
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My HR Department made me wait on the sillly letters. Next time, I'll know.
Just to follow up on my situation, obviously being more proactive with the COBRA situation is important.
Having said that, here are my latest numbers about 3 1/2 months after finishing my unplanned break.
CD4: 898, 27% VL 120
Yes, that damn viral load won't quite go away, maybe because I missed one dose since being back, but you know what? It's close.
And more importantly the CD4 is way up...when I started medicines 50 weeks ago it was at 345 with a nadir shortly before of 312. 160%-187% improvement. So the moral of the story is...try to keep treatment uninterrupted if possible... if not, get back on the horse.
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sorry...redundant post.
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Just a suggestion but if you find yourself in a tough spot like this again I would first ask your doctor if they have any samples of medication available. Often times they will have boxes of samples left by drug reps that they give out to folks that are having problems getting their medications. They don't have enough for everyone so you need to ask as they will not offer. You can also check with the drug manufacture as they all have patient assistance programs with variable requirements. Here is a link with drug assistance programs as well http://www.atdn.org/access/pa.html (http://www.atdn.org/access/pa.html)