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Hi, I'm new, unemployed and uninsured living with UC :(

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Posted 7/6/2011 9:12 AM (GMT 0)
Hi everyone, I'm new to this forum :).

I'll start off with who I am. I was having UC symptoms when I was 16. I suffered through the ordeal undiagnosed until I was 18. It's not easy when a high school student has to REALLY go, and before he could, he needs to raise his hand to get permission to even leave a classroom for the restroom. What a sh!tty situation I was in. Ugh, I remember that one time I had an accident in class because of it. I guess I couldn't keep my butt shut haha.

Ah, those were the good times (sarcasm). Yup, I had a horrifying and embarrassing 2 years of my life compliments from the very very incompetent doctor(s) I was seeing during that time.

Now, life doesn't get any better at 29. I was recently laid off from work (stupid recession), which leaves me without health insurance. Oh yea, I decided not to take the COBRA (a continuation health benefits offer for Californians). Who would? It's almost $1,000 per month for me! How outrageous!

I feel like my doors are closing. I'm single, I don't have a wife or a domestic partner to leech off some health benefits. This really sucks, because I've never had a gap in work EVER since I was eligible to work - since my teenage years. Stress isn't a good thing for me, and for most of you, because it really triggers the flares.

I take Sulfasalazine EC and 6-MP. With only 3 months supply left, I fear of not being able to get a job with a benefits package. I called Xubex, a pharmacy that carries Sulfasalazine EC, and another door shuts in front of me as a Xubex representative said that they don't offer a patient assistance program, which means I'd have to pay full price of the medication.

How am I going to pay for my meds? Move to Canada? Go south to Mexico to buy some meds at reasonable prices?

Ugh, is this karma? What did I do to deserve this?

I'm lost. Where can I find a GPS for UC purposes?

Has someone gone through similar situations? If you feel like some suggestions are better off said privately, PLEASE PM me. Anything from any one of my fellow UC'er would help. Thank you! :)
Posted 7/6/2011 9:36 AM (GMT 0)
I can't offer much advice but only my sympathy. I thought being diagnosed with UC was bad luck but having UC and not being able to afford medication is far worse. Please feel free to vent as much as you need on here, we are all friends here and can lend a sympathetic ear. Sometimes just talking helps, perhaps other members can come up with ideas.
Posted 7/6/2011 9:59 AM (GMT 0)
Thank you, Max, for your open arms.

I'm sorry, I hope I didn't come off as a self-centered person who enjoys being most victimized. If it seems like it, it wasn't my intention. I'm here for words of wisdom :)

I don't think we can compare which situations is worse, because it's all subjective to one's own feelings...so, it's not right to say my situation is worse than yours.

I'll just laugh off my past UC experiences. Maybe I'll continue to laugh some more when I run out of meds, and then regret for throwing away expired Prednisone haha...
Posted 7/6/2011 10:10 AM (GMT 0)
oh.no.my.gastro,

Welcome to the forum.

Your life really sucks at the present; hopefully your UC is currently not at its worst. I know there are some programs for people who can't afford the drugs. Maybe of of the moderators can guide you on those.

I just checked the prices of 6MP, and the RX price currently for me is $31.95 (with copay its only $20). I found an old Colazal (Balsalazide) RX price, and that was $87 for 360 tablets.

I hope you'll find a solution fast and get that stress out of your daily life.

Hang tough. turn
Posted 7/6/2011 11:38 AM (GMT 0)
It sucks but you need to move on. Try to find a job with benefits ASAP! Most employers make you wait 3-6 months before bennys will even kick in so get on it. Even some part time positions (might be easier to get part time work) offer full benefits.
Posted 7/6/2011 12:17 PM (GMT 0)
oh.no.my.gastro,

Yes, you're in a very tough spot. UC is bad enough, but then not to be able to afford the drugs,  that sucks.

Alot of the drug companies have Patient Assistance programs, try and investigate those - if you qualify, you may only then have a $15-20 copay for drugs.

Also, what about Medical? I don't live in CA, but I've heard lots about their Medical program?

The other thing I would try is to call your local GP and GI and ask them for samples. And even if they only give you a week's worth, you may have to keep calling to get more.

Good luck and let us know how it works out for you.

I hope you feel better soon.

Posted 7/6/2011 1:44 PM (GMT 0)
call your GI and let them know what is going on. When I was first dx'd I had just began a new job and at the same time toilet bowls full of blood. I then hated that job and found another so I had to wait 6 months w/out insurance.

I racked up about $3k in medical bills but my Dr's. office let me do payment plans. Part of the $3k was a scope I had to have done, but the Dr. said he'd charge less knowing i had no benefits.

Call your GI to see if there are cheaper alternatives, you don't want to end up in the hospital with an even bigger bill. I know starbucks offers benefits for less than 40 hours a week.

Hope things work out for you.
Posted 7/6/2011 3:36 PM (GMT 0)
oh.no.my.gastro,

     I agree with the previous posts.  Call your doctor and let them know what is going on.  When I didn't have insurance they charge me a lesser price than if I had insurance. I was working part time and he charged me  a price I could afford.  Doctors have samples all the time and they are willing to give them to you if you let them know.  I was surprised and relieved when my doctor told me to let him know when something like that is going on and we can work something out.  It's been years ago but I'm willing to bet your Dr. will do the same.

Posted 7/6/2011 3:54 PM (GMT 0)
Sorry to hear about the loss of your job and insurance.  That it a HuGE fear for me. I do have one suggestion.  When I was laid off from work and had to go on Cobra, that cost of Cobra was HUGE compared to what  I was paying, however, I was informed by my employer that if I didnt take the Cobra, and if I had a lapse in coverage for more than 60 days between Cobra ending and new insurance starting, I would not be covered for any pre-existing conditions!!  I felt that I was forced to take the Cobra (that I couldnt afford) until I found a job and my new coverage started

My Dr actually called some of his pharmaceutical reps to get me a month supply of Asacol 800HD because my insurance wouldnt cover it.  It is definitely worth making the call to your Dr.

Wishing you luck and I hope that everything works out for you!!

Posted 7/6/2011 4:01 PM (GMT 0)
Just wanted to give some suggestions on coping without meds in the future. I am a person that has taken everything (almost) available med-wise for UC and not much helped.

It may be possible for you to make your symptoms better (less D, less blood, less pain, etc) using diet modification. It does not involve buying anything. It does involve removing certain foods and drinks from your diet and keeping a daily journal to see if things improve and what foods might make you worse.

Try removing bread and gluten products first. This stopped my bleeding pretty fast. It may not be as dramatic for you, maybe take longer. Since you have internet access look up "gluten" foods and make a list of things NOT to eat/drink.

Secondly, remove all dairy. Another known problem for UC'ers. Forget about being tested for gluten and dairy, I was and the tests were negative, which kept me from removing them for years. When I did remove them I got better. Your body will tell you when it's unhappy with what you're eating/drinking.

Alcohol? Yes it causes problems too. Hard to give it up when you're feeling down about life. So just cut back and see if you feel better the next day.

Getting a job with insurance should be your goal but in the meantime try diet modification. You will feel that you are in control of some part of your UC and it might help you. If it doesn't help then at least you gave it a try.

Best wishes.

P.S. last tip. Have you looked for very high deductible health insurance that you can afford? The goal here is not to get insurance paying for the meds but the meds cost much less when you present your insurance card at the pharmacy. Do the math if possible and see if it would save you any money on meds.
Posted 7/6/2011 4:18 PM (GMT 0)
I recommend you call your GI and get a script for medication that has a patient assistance program. Canasa has a great program where you can get a box for $10 or $15 a month. You can try to get on AsacolHD, they have an assistance program. Mercaptopurine isn't too expensive as far as I know but you could look into ordering from Canada or Mexico. I have read that buying drugs in Mexico and traveling over the border with them is not easy so I wouldn't even try to go that route. You could also ask your GI for samples. My GI gave me so many samples when I was uninsured, I wouldn't have been able to survive without her help. I am so thankful she was able to do that for me. Hopefully yours can help you until you get back on your feet.
Posted 7/6/2011 5:24 PM (GMT 0)
I was buying sulfasalazine in Mexico. Even smaller border cities carry Pfizer EC coated brandname as Azulfidina. Price is 1/3rd what the brandname cost in the US. 60 500mg tabs are $178 pesos($15). This is about $30 a month if you take 4 tabs per day at current exchange rates. Prices are supposed to be fixed in Mexico and are printed on the bottom of the packaging.

The problem that you might run into is that Mexican Pharmacies usually carry only 1 bottle. This means you might have to stop at a bunch to get the 90 day supply ignored by customs.

Mesalamine drugs were more expensive than in Canada but I did not go to the huge drug store city in Los Algodones near Yuma, AZ.


Check this website for information on high risk plans in your state. They are much cheaper than COBRA but usually rules require you to be uninsured for 6 months. Their drug coverage is not that great so read the plan.

finder.healthcare.gov/
Posted 7/6/2011 7:48 PM (GMT 0)
Just go to the hospital. My ex went and racked up 10,000 in a couple hours and since she makes no money she did not have to pay.

Oh and there was nothing wrong with her, she just thought she had my problems since I had been in the ICU for a week.

Hospital has 'charity' program and she ended up with medicaid paying it or maybe medicare.
Posted 7/6/2011 9:42 PM (GMT 0)
Thank you thank you! I really appreciate everyone's advices. I guess you all must not be from the urban California after showing such kindness haah j/k.

KiWi44: Hmm, I've never tried Colazal. Originally, I was on Asacol a month before being laid off, so I switched to a generic Azulfidine EC because of the cost difference. Have you taken both Colazal and Asacol? And, how much different was it for you?

Dsm4life: I'm trying my best right now haha.

InSoFla, Beth75, Cee7Jay1: I've been very open to my doctor. I told him about my situation, and we were able to work something out as he had to mess around with his paperwork with the insurance company so I could get an additional few months of meds ;). Also, he gave me some samples which will give me an additional 2 weeks after.

I think the problem is that I feel like I have always been so self-sufficient financially and mentally. I am not sure if I should call him again and ask for more samples if my meds run out and I don't find a job by then. Would I be asking for too much?

MotherofTeenwithUC: it really sucks to hear that pre-existing conditions aren't covered later if a person decides not to take advantage of Cobra. Sounds absurd if you ask me. I can't believe this crappy health system we have :(. I had no idea about this. I've always worked for public agencies, and never in the private sector, so I've never had to deal with health insurance issues :/. Thanks for the heads up.

imagardener2 2.0: You are definitely an upgrade of Garmin GPS when it comes to getting directions for a more healthier life with UC. Thank you. Very high deductible health insurance? Thanks to the sticky in this forum, I printed out a copy of needmeds.org's card for discounted meds. Is this what you're referring to? Are other discount cards specifically for UC and other chronic illness sufferers?

notsosicklygirl: Thank you. I will definitely check out Canasa and AsacolHD programs.

AZYooper: HEY!!! I'm going to Mexico in a few weeks. Not kidding here. I enjoy learning about different cultures :) (and no, I'm not afraid of the ongoing Mexican drug war.). Well, I'm going to have a representative--my Mexican friend--to be my spokesperson when we go to a pharmacy, because I am not Mexican and I don't speak Spanish haha. Do you also know the Spanish name for Mercaptopurine? Thanks.

aguywithuc: Hmm, how did she do this? Many hospitals in the Los Angeles area is like a warzone. It seems like workers in the medical field are desensitized to people's medical issues. I guess maybe because many people who go there report of medical complaints which later found unsubstantial, so they're now tired of people's BS? Or maybe there is just a high volume of need in these hospitals? Don't know. But I do know that it's probably a longshot for me to get pass a hospital front desk within a couple of hours. Your ex must've had some charming skills haha.

Thank you all for your support. :)

Post Edited (oh.no.my.gastro) : 7/6/2011 3:49:01 PM (GMT-6)

Posted 7/6/2011 10:21 PM (GMT 0)
I'm Canadian.  Marry me!!! :)  Between the two of us our kids would have no chance at health!

Seriously you could actually try pharmaceutical companies.  Most have funding availabe depending on your income.  Check out the web sites or be aggressive and pick up the phone.  My mother gets her drugs covered (for hemophilia) from the makers of the drugs.

Posted 7/6/2011 10:47 PM (GMT 0)
The chain drug stores in Mexico have computer systems that search under the American brand name or generic name. I can only read a little Spanish and had no problem.
Posted 7/6/2011 11:28 PM (GMT 0)
oh.no.my.gastro,

I am not sure if I should call him again and ask for more samples if my meds run out and I don't find a job by then. Would I be asking for too much?

No, you would not be asking for too much. Call him a few days before running out of the meds, so he can put them aside for you.

Let us know how you do.

Posted 7/6/2011 11:35 PM (GMT 0)
Thanks to the sticky in this forum, I printed out a copy of needmeds.org's card for discounted meds. Is this what you're referring to? Are other discount cards specifically for UC and other chronic illness sufferers?

No that's not what I mean. Health insurance with a high deductible costs less than a lower deductible policy and once you have any type of insurance your Rx meds cost less because the insurance co. has negotiated a lower cost.

However once you are diagnosed with UC it is a "pre-existing condition" and you will be charged a higher rate than someone without UC or another condition, or you may be turned down. For people with UC the best bet is a group plan at a secure company because you will get the lowest rates, a government job is probably best. I paid for my all my insurance being self-employed but still survived. And you will too.
Posted 7/7/2011 12:13 AM (GMT 0)
Hi!

I'm in the same boat. I'm in WA now, but used to live in So Cal for many years. I was recently let go from my job and opted out of COBRA due to it's expense. I told my Doc and he only charges me $67 per visit and I need to go only as needed.

I'm on Sulfazine EC as well...8 pills per day. I called around and found a 1 month supply to be average $100 per month. I then called my pharmacy and told them I am no longer insured and would be paying cash. They discounted me to $81 per month. (they don't want to lose business) This is my only med other than prednisone which is already cheap.

WA is similar to CA, where there are so many sliding scale places you can go. It may depend on your area though and it's not the best care or the best neighborhoods. But I'm wondering if you would at least be able to get med's on a sliding scale?

My best to you! I know how stressful it can be, but believe it will get better.
Posted 7/7/2011 2:22 AM (GMT 0)
Thank you guys for the follow-up replies. Will update and share whatever that could be helpful to others. :)

rbartolo, sure why not? haha. You're right, I really need to be more assertive and persevere on getting what I need.

Loves-Pearls: You are definitely familiar with my situation. Thank you for the suggestion!
Posted 7/12/2011 8:50 AM (GMT 0)
oh.no.my.gastro,

What state are you in? And if you don't mind sharing, what city metro area? Reason I ask is that I'm not all that far removed from your situation so I'll share my thoughts and ruminations and perhaps they will might help you.

I was on COBRA for 18 months, then went to private insurance--now just over $1,100 a month, the benefits suck, and we have no prescription drug coverage. Been on that for a year and a half, but I'm laid off and not finding work.

House is in foreclosure, but we're filing Chapter 7 Bankruptcy mostly to buy time. If I can find work, particularly something with benefits, and it pays enough, we could switch to Chapter 13, do a repayment plan, and keep the house. If not, then it's Chapter 7 and keep looking for work while paying health insurance.

I've contemplated Mexico or Canada, and I already get my generic Asacol from Canada. Be happy to step you through how to find which legit Canadian pharmacy has your meds for the cheapest price.

There are states toying with the idea of a state health care plan--I'm not sure what the state level equivalent is for the word nationalized. Statealized? Anyway. Keep your eyes open for any development there. Vermont and Oregon are two, but I suspect others are thinking about it as well.

Let's say I go Chapter 7, we lose everything, and eventually we lose our health insurance. Right now, I'm in Puyallup, Washington about 6 miles east of Tacoma. Well, I go look for any job I can find say around Bellingham, Washington and find an apartment rather than live with my wife and 3 kids under a bridge or in a yurt. Blaine is 20 miles closer to the border, but Bellingham is 20 times larger.

Bellingham to Vancouver is about 50 miles. OK, maybe I find a great job in Blaine and a great UC doc in Douglas or White Rock or Surrey. But, 50 miles to a UC doc ain't that bad.

I see my UC doc every 6 months to check-in, get blood work, and get my prescriptions renewed. I go every 3 years for an EGD and every 5 years for a colonoscopy.

It's possible, without health insurance, to remain in the U.S. but avail oneself of health care.

If I had to move to Vermont or Oregon just to get health care, all would not be lost. I skied in Vermont years ago with my brother, and we had a blast. I really liked the place. Been down the Oregon coast, US 101, and it's also a beautiful place.
Posted 7/12/2011 8:53 AM (GMT 0)
Loves-Pearls,

Do you have a WPDP card? If not, get one. It's free. Every member of the family who is a WA resident can get one.

They don't have the best prices on everything, but it's something. I get my omeprazole (generic Prilosec) through them and it's the cheapest anywhere, even cheaper than Canada.

http://www.rx.wa.gov/
Posted 7/12/2011 11:50 AM (GMT 0)
Noah_Bodie,

I really feel for you. I hope you can get a job with decent benefits and insurance - I know those are hard to find these days especially.

I've been out of work for some time now and it's depressing.

Let us know how you make out. and Good luck to you and your family.

Posted 7/12/2011 7:58 PM (GMT 0)
Thanks InSoFla,

Been looking since December, but only 3 interviews; however, all 3 have been in the past month so perhaps things are breaking free.

If anyone is looking for a, well, sobering read on the times, check out "The Fourth Turning". Couple of good concise wiki pages about it and the authors.

http://en.wikipedia.org/wiki/Strauss_and_Howe
http://en.wikipedia.org/wiki/Strauss-Howe_generational_theory
http://en.wikipedia.org/wiki/Generations_(book)#List_of_Generations
Posted 7/12/2011 11:42 PM (GMT 0)
Noah_Bodie,

Wow, the story you've told sounds like you've gone through some very rough times. I'm sorry to hear that. And yes, please do let us know how you make it through. I'd be very interested to read.

Oregon. Hmm, you know, after I got laid off, I visited a friend in Ashland, Oregon for about a month. A very beautiful town I must say. People are much more friendlier than many I've come across here in California haha. I was really considering moving to there, too! Now that Oregon wants to have a universal health care system there, it gives me the more reason to move there.

I had no idea there is a generic Asacol. I thought it was patented until 2012. I would love to get my hands on them..hopefully at much lower costs.

What suggestions do you have about getting meds from Canada? I currently stay in the Los Angeles area in California. Making a trip to Canada is not a problem for me. I have friends living in both Oregon and Washington, so I would not mind taking a road trip to Canada and visiting friends along the way.

Thank you!!!!
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