Saturday, June 16, 2012

When Doctor's Charge For Patient Assistance Medications Forms

This month I had to leave two of my prescriptions at the pharmacy because I didn't have the money to pay the co-pay. Next month my COBRA is running out and I cannot fathom what I will do without it on July 31.

Many of my doctors have been more than generous with me giving me samples to help me off set the prices of my drugs. One of my doctors even helped me fill out a "Patient Assistance Program" Application and faxed it in for one of my injection drugs that costs over $3k but even with my co-pay costs $1k each month. With the Assistance program I received the drug from the drug company.

I take between 14 and 20 medications on any given day. Because I had a flare I'm taking medication for thrush right now. It wasn't expensive but I couldn't afford the mouth rinse and had to take an oral medication. Meanwhile, I am already having difficult keeping many of my medications down. I vomit them with regularity. Then my specialist will ask if I want omeprazole to help. More pills. (More expense. For what? Side effects of side effects?)

Anyway- I often leave prescriptions at the pharmacy or I snap my thyroid medication in half for a week or every other day (to make the samples last longer).

A year and a half ago my credit cards were at zero balance (my car is also paid off). I don't like debt. Then I had to use them for medical emergencies. This meant co-pays to doctors and medications. Slowly they crept up but the balance on them was still not very high. But higher than I could pay off because I am on so many medications.

I have never missed a payment to them AND I was late ONLY ONCE and it was when I was in the hospital. I payed them the moment I was out and explained it. They removed the late fee. Over time they raised the APR to OVER 30% on both cards. Each month I have been unable to pay the balance down because of this high APR. I called them several times explaining that I will never pay off the card with this high APR and that making the payments was getting difficult. No one worked with me. They have cost society so much money and gotten bailed out and then they charge ME that much when I have NEVER missed a payment and in integrity have asked for a lower APR?

Last week I made the decision that leaving MY DRUGS at the pharmacy but paying people who were charging me 30% was not wise. So I paid each of my doctors $10 on the balance I owe for past amounts, then I bought my medications, and I didn't pay my credit cards (that have ONLY been used for medications or co-pays). And it freed up enough money for more medications.

And I had $3 dollars left over this month.

I don't take medications like antidepressants BECAUSE THEY COST SO MUCH. It is one less co-pay. I don't take pain meds and muscle relaxants BECAUSE it is a copay. I suck it up.

But I don't have that choice with my anti-seizure medications. And I am on two of them. Brand. I tried to take a non-brand and I had seizures. My insurance covers brand anti-seizures at half for one and not at all for the other. And THOSE are the ones that work for me.

Yesterday I sat down with a list of everything I am taking and checked the co-pays. Then I found out the annual prices I am paying. (Some are about $2500 or more per year- a few are only $40 copays- but they all ad up).

I printed out Patient Assistance Program applications for every major drug I am on or take with regularity (more than 14 days per month). I then put them in a pile for each doctor and specialist to make an appointment for them. They all need my tax returns and signatures and forms filled out.

Then I realized that a few of my doctors require me to pay $200 per PAGE for any form. This puts me in a bind. I don't have the money to buy my drugs now. A few of these doctors who do charge require the money up front. You have to give them money to sign these forms.

I called the Patient Assistance Program and said, "If I am on INSERT YOUR DRUG HERE and my specialist charges $200 per page and you make them fill out 7 pages, I cannot afford to APPLY for the PAP. Because you will often deny it the first time and then I have to appeal. Then it is MORE paperwork. I might as well pay the $1000 co-pay from my insurance every month. It is less than I'm paying my doctor up front even though over time it is cheaper. BUT I DON'T HAVE THAT MUCH RIGHT NOW."

The woman on the phone said, "I didn't realize doctors do that." I said, "Many of mine do. They are charging for their time. They cannot get reimbursed from insurance for filling out paperwork so they charge their patients to value their time. Maybe your company can rectify this by making the forms shorter and less expensive or just do what we all know you do and pay the doctors to sell your drug for you."

I was angry. But I was also being realistic.

I also am at my very last rope. I have exactly one month and 13 days to even make appointments that are covered with COBRA. I need to make this happen. It is my job to stay alive.

I pay for my COBRA. When it runs out I will pay out of pocket for many of my medications. And though I do not qualify for many of the low income programs and assistance, after taxes and my medical write-off's, last year I netted $600. But that was AFTER my documented expenses. Most programs check your income BEFORE. Many people cannot believe how much I spend on my medications and healthcare each month. But yes - I do. Doctors, and medications, and sundry expenses ad up. And many of these PAP's want to know what you spend on your medications each year. So I will have to submit each year. That means I will have to pay my doctors each year for the same paperwork.

Doctors who have patients on medications that cost more than a mortgage payment should let their patients fill out the forms rather than charge us for the forms AND watch us try to scramble to pay for the meds.

After all, I already tapped out my 401k paying for the first few months of treatment. It isn't like I haven't invested in myself.

There has to be a middle ground. I value my doctors time but I value my life too. If they want me to take a medication and it is working we need to find a way to keep me on it. Doctors charging for forms is happening BECAUSE of the need to be compensated (and insurance won't). I'm recognizing it. I'm also not sure of the answer other than maybe the medications and drugs could be priced more fairly?

Patients like me don't get $5 co-pays. And even in the generic form the drugs I take aren't cheap. (And some aren't generic yet).

If there is an answer I don't know it. If there is a middle ground I haven't found it. But much of it is insurance compensation, the pharmaceutical over pricing, and every man in it for themselves.

I never asked to be chronically ill. It isn't a personality fault. But if society has paid the price for me, I want you to know, I have paid my share too. I have paid and paid and paid - everything I have, everything I have worked for, and everything I consider goes into how to pay for my healthcare and my medications.

19 comments:

  1. Horrifying but not surprising. Consider submitting this to the Participatory Medicine blog and/or KevinPho, MD for post to a broader audience.

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    1. Thank you for your lovely comment. And this does need a wider audience because it is not "my problem" but a social problem. It is a problem for everyone who spends their money on medication and will never be "healthy" enough to get off of them even if they are working.

      Sending love!!

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  2. I'm so very sorry to hear this. A friend of mine posted a link to your blog on facebook, so I wandered here by accident...

    You are managing this difficult situation very well. I hope you are able to figure something out---be persistent with those doctors and nurses (just as it sounds like have).

    Good luck! I'm sending positive vibes your way.

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    1. Thank you for your kind comment. And yes- perhaps persistence with medical staff might help with getting forms filled out. But it won't help get them compensated for their time. Pharm companies will still be charging too much (and setting their own prices) for drugs. And insurance companies will not be paying and reimbursing. And chronically ill patients won't be able to afford their healthcare even if they work (or work part time and cannot afford or qualify for good insurance).

      Sending love!

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  3. I am shocked, surprised and sad to read this...I hope more people get to read this.

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    1. Thank you for your comment and your kindness. I do as well. It isn't MY personal problem. It is a social problem. It is why I wrote this blog. Living as a chronically ill woman with a professional life means I have to deal with issues that MANY people deal with - but I have to deal with them either silently OR I write about it and let other people know. And hopefully we can all make a difference together.

      After all, having no money to pay for my life is not something I am proud of. But these things MUST be discussed.

      Much love!
      Melissa

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  4. My God, after reading this I had a stomach ache. My thoughts, prayers and positive energy are with you, you are incredible the way you are handling this. and you are right, it is a social problem. You have become your own advocate and in turn your voice (thru your writing)help others who are unable to let themselves be heard!

    My sister was diagnosed with Stage IV ovarian cancer and went on disability from her work to go thru treatments. She required surgery, after which she had a fluid build up in her lung and had respiratory failure, 4 days in a medical coma and then recuperation time BEFORE she even started chemo. She was unable to return to work when her disability time ran out and she was "administratively removed" as an employee in the middle of chemo, her insurance was stopped immediately. She then had to find insurance who would take her with a pre-existing condition. It was a nightmare. She had long-term disability which she had paid into for years that made it possible for her to pay her insurance, but she had copays for her daily meds and the chemo pre meds. Then the long term disability company kept trying to stop her payments, one time commenting, "you sound really well for someone who has Stage IV cancer"

    Keep writing and speaking out on these issues. i will share your link with others.

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  5. This is such a clear statement about the troubles that so many people in the US face. I wish you didn't have to write this, and that it wasn't happening to you. Most of all, I wish you didn't have to deal with illness in the first place. I hope lots of people see this and share. On one hand, it's hard to believe that we treat people in such a rotten way, but on the other, given the social climate, it's not a surprise. Thank you for writing this.

    BTW, I am an American living in Switzerland. Doctors' communication activities are itemized, and covered by insurance here. Makes sense to me.

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  6. Snitster, this kind of expensive rigamarole is one of my pet peeves with the whole system. It's utterly disgraceful. And it's not like it gets any better or easier if you go on disability -- which of course they always reject people for the first time around, making them jump through more hoops and get deeper in debt just to live on a paltry $13K a year, and still have to pay premiums for Medicare/Medicaid. And it's the most vulnerable people that our system puts through this, people for whom it's a challenge just to get up in the morning and get through the day.

    Frankly, the fact that you have any sanity left after all this is amazing. Keep writing, my friend. The first step toward forcing our society finding a way out of this mess is for people like you to tell the truth about it. Massive hugs. And I'm sharing this link.

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  7. Add me to the list of those who experienced an ache while reading this. I know that this is not just your story--it is the story of so many, particularly, as The Accidental Amazon noted, so many who are already struggling just to make it through the day. Navigating the insurance maze is tough even when you feel completely healthy. I was appalled, but not surprised, by the numbers I was reading.

    The pervasiveness of this situation is the reason that we need your voice, and all of our voices, dedicated to speaking out until we reach change.

    Until then, I am sending warmth and strength your way--and sharing the heck out of this post.

    Warmly,
    Ann

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  8. I'm horrified. And I ditto Meredith's comments to widen the reading audience for this information. Too many people live in a bubble. It's time some illusions were destroyed.

    Sending love,
    Jody

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  9. I am so sorry you are dealing with all this crap on top of everything else. It's simply appalling. And you're so right, too many people, and usually the most vulnerable, are dealing with the same type of things. It's absolutely horrifying. Keep speaking out. Change has to come. Thanks for your honesty.

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  10. I have had to take the day to process this horror. It's one thing to read the laundry list or the headline -- it's another thing to imagine these ridiculous (and expensive) bureaucracies that become a full time job as you try to stay well. Thank you for sharing your story, Melissa. It's our country's problem, you are just bearing the brunt of it.

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  12. Sore ThroatJune 18, 2012 4:29 PM
    This is horrible, so not your fault and so much the fault of a for-profit health system that is SICK! As a social worker, I used to fill out lots of those forms, and there's no reason you can't and just have the doc's office stamp a signature. Their charging a ridiculous amount of $ for what is their responsibility is a sin. We don't get reimbursed for everything we do in this life.
    I agree with Meredith and all who say your story must be heard.
    Best wishes,
    Mindy

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  13. Your story the the voices of many who have posted here are needed. There aren't easy answers, but there is something wrong with the system. Please continue sharing your story.

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  14. The hurdles placed in the way of accessing necessary medications are brutal and impossible to defend. One can ask the pharmaceutical companies why they charge $X a month for a particular medication, and the answer will always be that they have poured $millions into research and development on this medication. But they will never provide an itemized list of their R&D costs, they ignore the fact that much of the basic science of R&D is paid for by taxpayers via university and NIH research, much of the R&D is for me-too drugs that offer little value, and companies often include physician "education" (ie advertising and drug reps) into R&D-type cost calculations.

    Then, in order to avoid the political fallout of making lifesaving medicines too expensive for most people to afford, they create "patient assistance programs" that throw up numerous administrative barriers to ensure the process is as complicated and difficult as it can be. They also have differing requirements and qualifications for applicants, so that there are no centralized forms that can be simply filled out once and submitted to various companies.

    This is what we get when we have a for-profit pharmaceutical industry, and a medical system that is profit-focused.

    Fees for forms are common, though the $200 charge per form is absurd. I have worked in offices where the fee for forms was $15 if not done during an office visit, or the form could be completed in an office visit. If the patient brought in a form that was fully completed and all I needed to do was to sign, we often just ignored the fees...because, really, we hadn't actually done much (or any) work. The charges for fees exist b/c of the multiplication of forms in modern medicine: for disability, for motorized scooters, for handicapped parking spaces, for prior authorizations, for medicine assistance: all of which are important aspects of care, but which may or may not be as simple as they appear and which no insurance pays for completing. At least in primary care, where our for-profit system requires offices to make money to stay open, many physicians already feel they are just barely making it and don't see the point in adding on more work that will not be paid for.

    The necessary step is to remove the profit motive from medicine. Make sure companies recoup their honest R&D investments keep some profit, but don't allow them to jack up the price just because they can. Make primary care and medical care in general focused on the patient's health and coordination of care, and pay for quality of care, not just quantity of care. Ensure that people can access care (and medicines) that they need, even if they can't afford the world's best insurance.

    Your experiences are an awful symptom of an underlying illness, and it will take a lot of work to make that illness better.

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  15. nice posting.. thanks for sharing.

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  16. WebPAP is an enterprise software solution for healthcare providers to manage the pharmaceutical companies Patient Assistance Programs (PAP applications PAP Software).
    Log on https://medserviceswebpap.com/

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