in need of some advice.

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Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 11/14/2009 12:36 PM (GMT -7)   
I haven't posted in a while but I was diagnosed back in November 05 and I also have APS and need to take coumadin. The past few years have been crazy, I've been to the ER four times, hospitalized, chemotherapy, bunch of medications, had myocarditis, pulmonary embolism, etc. The list really goes on but you get my drift..

But that is the least of my worries. I just turned 25 years old, and my mom was taking care of my health care cost every month while I paid for medications, doc visits, labwork. However.. I did not realize she was late on a payment and had let it lapse. By the time I found out, the grace period was already up and my medical insurance was terminated. I had no idea, because I had just gotten refills on medications and just had a visit with my doctor and my next appt wasn't for another three months.

Prior to all this, I was a member of Kaiser Permanente for over 10 years. And now they've kicked me to the curb. I've tried reapplying but of course I was denied. I don't know what my other options are. I'm in need of health care, but I know I will most likely be denied due to "pre-exisiting" conditions.

I'm going to try and reapply for a reassessment, and I have 30 days to obtain letters from all the doctors I've seen in the past to help my case. However, it's a long list of doctors, that includes my primary care physician, rheumatologist, dermatologist, neurologist, ophthalmologist, OBGYN, head neck surgeon, and optometrist. I've read people getting denied for things as little as abnormal pap smears. And I know that my reassessment is probably not going to do any good, even with the support of my doctors.

I'm not eligible for hipaa since my account was terminated for non payment. I don't know anything about cobra, but from what I've read, I don't think I'm eligible for that either. They said I can apply for the MIRIB Major Risk Medical Insurance plan for California. However, enrollment into that is not guaranteed either and they only accept a certain amount of people each year due to funding. The current wait list is about 300+ people.

I can't sleep, I can't eat, I'm scared. I'm going to run out of medications soon and I don't know what to do.
I was diagnosed with Lupus with Antiphospholipid syndrome (APS) in Nov 05.
Current list of medications includes:
Cellcept 250mg/ 4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 6mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines.
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/14/2009 12:54 PM (GMT -7)   
Perhaps you can get some advice from your State Insurance Commissioner's Office or your elected officials? Sorry, that's all I can think of right now.

First, thou, take a deep breath and stay calm. Losing sleep & food will for sure make your symptoms worse, try to get back into a regular eating and sleeping schedule. It will work out however it's going to, worry and panic won't change that. If you can stay calm and focused and keep investigating different options, I'm sure something will help you.

Is there a coumadin clinic at the local public hospital? Try to see a dr of some sort at the public hospital, they may have helpful ideas. Check if any of your doctors have other ideas. Sometimes if you draft the drs letter for them you'll be more likely to get a quick response - at minimum give them a short list of what the insurance company appeal needs.

Try to find an attorney who deals with health insurance companies. They are sometimes difficult to locate, but they know all the right laws and insurance jargon to get thru when a regular attorney can't. PLUS, they work on a % basis - they won't take your case if they don't think they can win it, and they won't cost you anything up front if they try - only a % if they try and don't win.

Hope something of that sparks an idea that helps somehow (No, Cobra just requires your employer to continue to offer you coverage 18 mths after you've left employment.).

Hang in there,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 11/14/2009 1:12 PM (GMT -7)   
I'm trying to stay as calm as possible, but I'm not going to lie I'm scared. I get chemotherapy every six months and I'm about to reach that mark when I'll be needing it again soon and that's usually when my labs start going downhill.

With it being the weekend, there isn't much I can do right now. I've been reading up online, and trying to understand all these laws and jargon. But our healthcare system is such a mess.

The letter I received stated that if I want an reassessment, that I need to provide additional documentation supporting my request from a licensed health care provider familiar with my medical situation as well as a written letter from me. And just to be prepared to explain or correct any errors in my original application. And of course everything needs to be signed, dated, and post marked within the 30 day time frame.

I have a formal letter's written out to each of my doctors and will be dropping them off first thing Monday morning. I'm hoping that each one of them will cooperate and help write a letter of referral in my case.

I don't even know where to begin to look for an attorney. But that looks like something else I'll be spending today googling. I received the denial letter on the 10th. So my 30 days is already partly gone.

And yep, I'm not eligible for Cobra either since I wasn't under insurance through an employer.
I was diagnosed with Lupus with Antiphospholipid syndrome (APS) in Nov 05.
Current list of medications includes:
Cellcept 250mg/ 4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 6mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines.
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/14/2009 10:05 PM (GMT -7)   
Heidi, try calling the Patient Advocate Foundation which has an 800 number. They are specialists in fighting with insurance companies,and also getting you careand have emergency funds. I'm going to give you the website address but call the tollfree number and tell them about the late payment, they may be able to get you back on. This is exactly what they are for. This is not a fake site. There are real people here that can help. Here is the number 1-800-532-5274 and the website is
www.patientadvocate.org They helped my son get his heart surgery and get medicine for epilepsy when he had no insurance. they helped me get transportation to appointments when I couldn't drive and the people at the transport place were lying and telling me they don't do that, and then that they had a year long waiting list. People are evil sometimes, but these guys will really help you. I hope you please try to give them a call ASAP so they can try to get you your coverage back.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 11/15/2009 5:18 PM (GMT -7)   
Thank you, I'll try and call first thing tomorrow morning since they're not open today. To talk to a case worker to see what my options are and if they can help.

I have all my letters for my doctors and I'll be dropping them off Monday as well. Hopefully I'll get the support of my doctors and that can help my case in the appeal. Although I'm not holding my breath on it.

I'm just so frustrated, because of a late payment my insurance is canceled after being a member for over 10 years. There is nothing I can do. I can't renew my membership. My hopes of getting any other insurance is next to none. And there's nothing I can do.
I was diagnosed with Lupus with Antiphospholipid syndrome (APS) in Nov 05.
Current list of medications includes:
Cellcept 250mg/ 4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 6mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines.
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 11/16/2009 8:34 AM (GMT -7)   
Heidi,

My heart breaks for you. I'm glad you're going to take Lynn's and Marji's advice. I believe you're going to have to be real aggressive with this till you find someone willing to go to bat for you.

Sending gentle hugs your way.

Pat
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, leflunomide, neurontin, synthroid, triamterene, actonel, niaspan, lyrica, tri-est, cymbalta, acifex


Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 11/17/2009 7:34 PM (GMT -7)   
So I went to go drop off the letters today and for the most part the receptionists were nice and said they would leave the letters with my doctors. However when I tried to leave one at my dermatologist's office, they said I couldn't. And they sent me to medical secretaries who said I could only request one letter from one doctor. So I only had to pick one. So I'd guess getting referral letters from each of my doctors isn't going to work. So I requested it from my rheumatologist. Hopefully I'll hear back from my doctor and see if she has any advice for me.

I also contacted the patient care advocates, and they said a case worker will call me back by Thursday at the latest to help me with my case. So I'm waiting to hear back from them to see what they have to say.

In the mean time I'd guess I'm just stuck waiting. I put in an application with my state's high risk insurance, but there's a current wait list. And I think the number is around 350ish people ahead of me on the list. And they estimate the wait is going to be at least 6 months to a year if not more.

So I've been trying to search for a new job that offers insurance that I can use. I'm going to try and call free clinics soon and see if I can see a doctor there.
I was diagnosed with Lupus with Antiphospholipid syndrome (APS) in Nov 05.
Current list of medications includes:
Cellcept 250mg/ 4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 6mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines.
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 11/17/2009 7:52 PM (GMT -7)   
Perhaps you can ask for an extension to the 30 days? Do it now & don't count on it, but if it happens it might be helpful
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 11/18/2009 7:57 PM (GMT -7)   
Thanks for the advice..

I'm still going to try and appeal the denial, but even with my doctor saying that it probably isn't going to help. I'm not going to keep my hopes up on that.

Also, I haven't heard back from the case worker at the patient advocate's yet.

But what I did do is send in my application for the MRMIP program in California which is the Major Risk Medical Insurance Program which is guaranteed issued as long as you meet all the requirements. So I just have to wait to get approved by the state. The representative said the wait list number that they update weekly is a little misleading. Currently when I checked it said it was at 350. However enrollment is given on a first come first served basis and due to the space they have available. So some days if they have available spots open, say wait list person 4 and wait list person 50 could be enrolled on the same day. But either way, there still is a wait of at least 3-4 months.

So, it looks like I'll be getting my insurance back if not through Kaiser then I will definitely be able to get it through the state. However they have a rule to pre-existing conditions and there's an 3 month exclusion period after you've signed up and it's not covered until after that time frame. The only way I can get that exclusion waved is if I'm on the wait list for 6 months.

In the meantime, I'd guess I just have to wait it out. It does give me some peace of mind since they cannot reject me, I'm just keeping my fingers crossed for my health to be okay the next few months until then.

Also, since it's a State funded program. I can only stay on it for 36 months, after that they automatically dis-enroll you from the program. However, as long as you complete the 36 months, you'll be provided with a certificate of completion that would allow me to purchase individual coverage without any stipulations of pre-existing conditions.

That makes me feel a lot better knowing that at least I can get coverage eventually there's just a wait for it... wish me luck guys. And thank you again for all the advice that everyone's given me. I'll be sure to update as I find out anything.
I was diagnosed with Lupus with Antiphospholipid syndrome (APS) in Nov 05.
Current list of medications includes:
Cellcept 250mg/ 4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 6mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines.
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September


Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 11/18/2009 9:25 PM (GMT -7)   
Oops, it looks like I was reading old information. Apparently the 36month cap was lifted and you can stay on the program as long as you want now.
I was diagnosed with Lupus with Antiphospholipid syndrome (APS) in Nov 05.
Current list of medications includes:
Cellcept 250mg/ 4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 6mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines.
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/20/2009 9:17 PM (GMT -7)   
Heidi--
Id still call back the patient advocate and say they didn't return your call, youmay have just gotten a forgetful worker or a new person. They use alot of volunteers but can be really good. I'd still hammer them because they may have even more help and a better solution even yet. Maybe weigh your options. I suppose they are swamped right now too. My experience was very positive. I'm glad you seem to have some recourse. I just think you ought to get your insurance back.
Love, Marji
Ills--Sjogrens-Lupus cond., AI polygland. dysfunction 2, hyper/hypopigment, scoliosis,kyphosis,stenosis, deg.,O.A.,spine surgeries, salivary/lymphectomies, NASH, COPD, RLS, UT/GI bleeds, hystero, brain/nerve damage,TB
Meds--INH,Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, HRT and Lidocaine patchs, Voltaren gel, Klonopin, Vicodin, Restasis, Albuterol, steroids


Heidi55529
Regular Member


Date Joined Mar 2006
Total Posts : 147
   Posted 11/20/2009 9:52 PM (GMT -7)   
Someone from the patient advocate did end up calling me back. They took down more info, and told me they would look into what resources were in my area and then call back again. That was yesterday morning, and with the weekend coming up. I'll probably won't hear back until Monday or so.

The state program seems to be my only option for insurance at the moment. So I just have to wait for that to be approved, it's just going to take a few months. Like I said in my earlier post the current wait is 3-4 months. With a 3 month exclusion period, unless I'm on the wait list for longer then 6 months. So it'll be a while.

I also heard back from my doctor and she's putting together a letter for me for the appeal. However from what I've read online and from other people's experiences. It's probably not going to do any good. Kaiser Permanente, offers new plans/coverage for healthy individuals only and if you have the slightest flaw on your application. You're denied. But still, despite knowing that it probably wasn't going to work. I still needed to try and appeal their decision. And notify my doctor of what was going on since she was my rheumy from the beginning.

Also.. I've looked up different free clinics in the area and I found a few that accepts people without insurance and uses a fee sliding scale based on your income. You just need to bring in your last pay stub and ID to see the doctor. They probably don't have a specialist there that deals specifically with someone with Lupus. But at least I'll be able to see a doctor and they can maybe direct me in the right direction or make a referral. And help me find the care that I'll need.

I feel a little better because of the MRMIP program. But it's going to be a rough few months and I just hope I make it okay.
I was diagnosed with Lupus with Antiphospholipid syndrome (APS) in Nov 05.
Current list of medications includes:
Cellcept 250mg/ 4 capsules twice a day, Prilosec 20mg/1 capsule once a day, Plaquenil 200mg/one tablet twice a day, Metoprolol 25mg/half tablet twice a day, Prednisone 6mg/one tablet once a day, Coumadin as directed, Tetracycline 250mg/ two capsules twice a day, Midrin as needed for migraines.
-Avita cream, Clindamycin lotion, triamcinolone ointment daily to control skin rashes.
-Rituxan infusions twice every six months in March and September


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 11/21/2009 12:24 AM (GMT -7)   
I really hope you can get the health care you need in the meantime. I know what it is like to have no insurance. I dread the day my husband has to change jobs because I will lose my health insurance. He is pretty much stuck where he is until he retires for my sake.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 11/21/2009 6:17 AM (GMT -7)   

Dear Heidi,

It is going to work out, take a deep breath. There is alot of help out there. It's just knowing where to look and who to ask. My husband is in the same boat Red's husband is. Ask your pharmacist if there is anyway she could connect you to drug company med donations to get you over the next few months. Ask if the drug store itself, under your drs. ok, could DONATE a 90 day or weeks supply to you. Or give you the business card contact info for all their pharmaceutical reps, who truly, drive around peddling their wares and free samples out of their briefcase and trunk. Call each of your drs. and ask if there is anyway they could double your doses so you could take half a tab for twice as long for half the cost.... ask if they could give you samples to get you by until your state insurance approval comes in, (and it will, eventually) And buy a dollar store calander. Start taking notes and documenting everything and names and contact numbers of everyone you speak to. Ask for peoples full name and title, sweetly let them know you are taking notes and writing down everything you are told, because, (not that you don't trust them and the system turn , but that you are so sick, and scared and stressed and upset, you are afraid you will forget. Copy EVERYTHING YOU FILL OUT and send for any reason. Copies are cheap at the library. Ask your minister, or a friend's minister, if they could sponsor your med costs until you get your insurance back, or just put a prayer request in the church bulletin.  Lupus and cancer, transplants and autoimmune diseases seems like favorite diagnoses that insurance companies relish terminating coverage for. Just what you want, the fight of a lifetime, but how would you eat an elephant? One bite at a time.

hugs,

suetoo


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.

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