Why I’m against the way we dispense the birth control pill

July 31, 2013

I was put on “the Pill” the week I turned 18. I wasn’t put on it for birth control purposes, but because my previously-heavy period had gotten so bad that I passed out from the loss of blood. The doctors figured this would fix that problem.

Birth control pills

What it did was mask the problem. Once I was on birth control pills (BCPs), I could no longer have accurate hormone tests run. The specialist thought I had PCOS (polycystic ovary syndrome) but it would be another 7 years before I found out he was right. In the meantime, I just dutifully took the Pill every day, as instructed, and assumed I wouldn’t get pregnant and that everything was under control. My primary care physician (PCP) du jour always prescribed it.

A friend of mine was suffering from depression for a long time. She tried changing all sorts of things about her life. She got a new job, tried a new diet, saw therapists, but was still depressed. I saw her a few months ago and the transformation was incredible! She was the happy, upbeat person I remembered from so many years ago! She was dealing with some truly horrible circumstances at home, and yet she seemed happier than I had seen her in 10 years. What changed? She went off the Pill. She said the change happened quickly. She’s no longer in therapy. She’s just avoiding birth control pills. Too bad none of her doctors thought to try that. Apparently, it never occurred to any of them.

A friend of mine found out the hard way that because of a medical condition, birth control pills won’t prevent pregnancy for her. She found when she got pregnant!

I now take a half of a BCP every day. I do this not for birth control, but because I need the boost in my estrogen levels. This is how my endocrinologist prescribes it.

Hormones are a tricky thing. Mess them up, and you could be in serious trouble. I know this from experience and from what I’ve witnessed. So why are PCPs prescribing hormones? Why aren’t women being sent to endocrinologists? Now there’s even talk about making BCPs available over the counter, without prescription!

Let me be clear. I am very much FOR giving women better birth control options. I think that making BCPs widely available is a good thing, but it needs to be done intelligently. Women should receive free visits with endocrinologists. Only endos should be allowed to prescribe BCPs. Endos should be well-versed in the possible side-effects of BCPs. When I got horrible mood swings once a month, when I felt horribly depressed and wanted to cry for no reason, my endo knew to take me off the Pill, let my body settle down, then start me on something else. My PCP didn’t know to do that. After women get these free visits, then BCPs should be available at the local pharmacy free of charge. I strongly believe this.

On the other hand, I do not want to see women getting the Pill without seeing a doctor. This is an unpopular view among my very liberal social crowd, but having more experience with medical issues, I am very ready to confidently take this stand. There are just too many ways it could go wrong. There are women for whom BCPs won’t work as effective birth control, and many for whom it can have horrible side effects. We call it “the Pill” and yet there are many different formulas. Should I take an estrogen-based one or a progesterone-based one? I like the idea of only getting my period 4 times per year, but will that one work for me? I could ask the pharmacist, but what will they know? They have no idea what my hormone levels are. No, women need to see endocrinologists who know which tests to run, how to interpret them, which medications to prescribe, and how to handle the side effects.

Our bodies are too important to just hope that it all works out.

And by the way, if providing free birth control is so important, where are the free condoms? I don’t want to get pregnant, but BCPs won’t work for me, so I need something else (assuming I’m even fertile, but that’s a topic for another day.) Plus, I don’t want to get STIs, either! Condoms should be distributed at doctors’ offices and at pharmacies, free of charge. Those things are expensive! Let’s make it easier for everyone to avoid unwanted pregnancies and STIs.

7 Comments | Educating, Frustration, Healthcare, Medication, Politics, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms | Permalink
Posted by chronicrants

Inexcusable insurance stress

July 29, 2013

For a while now I’ve been on MassHealth. That’s the Massachusetts version of Medicaid. If you don’t live in the U.S., Medicaid is health insurance for the poor and the disabled. It’s partially funded by the federal government but it’s administered by the states. This means that the type of coverage you have, and if you’re even eligible, is based on where you live. Ridiculous, right? Thankfully, I live in Massachusetts, where I am eligible for MassHealth. In other states I wouldn’t have been able to get it.

Of course, that was before. Now I’ve won my long term disability appeal, so I’m getting my old health insurance reinstated. You’d think that was a good thing, right? Wrong!

Obviously my old insurance costs a lot more than MassHealth. I was on MassHealth not as someone with a disability (don’t get me started on that!) but as someone of low (in my case, nonexistent) income. So I didn’t pay premiums or copays, and I paid only tiny amounts for prescriptions. And my old insurance is used by more doctors, so in theory that’s good. But here’s the problem: referrals.

In Massachusetts, most health insurance plans are HMO. That stands for Health Maintenance Organization, but as far as I can tell their just trying to maintain their balance sheets, not our health. HMOs require that all doctor visits by approved by the patient’s primary care physician (PCP). If I want the insurance to cover any appointment with any specialist (except for eye care, for some reason) then I must get a “referral” from my PCP. This sounds good, until you consider the reality:

  • Many PCPs want to discuss each situation, so that means time, effort, and money (yes, we pay to see PCPs aside from yearly checkups) for each discussion.
  • The PCP can say no because they don’t think you need to see that specialist. That’s one of the reasons it took eleven years for me to be diagnosed.
  • The PCP can say no because they’d rather you see another doctor. Usually they want you to see one within their own hospital network.

I did my research. I asked around. I figured out exactly who I should see. Sadly, they took my old insurance but not MassHealth. I waited many, many months. Then, finally, they started taking MassHealth! I got the first appointment I could, for this Thursday. You see, with MassHealth, specialist referrals aren’t necessary – I can see whoever I want as long as they take my insurance! What a novel idea!

But here’s the thing: I can only use MassHealth as long as I don’t have access to another health insurance. But now that I’ve won the disability insurance case and I’m getting my old health insurance back, I’m going to lose MassHealth. Sadly, the changeover is due to happen on Wednesday. Yes, just ONE DAY before my big appointment! So after waiting for about a year to see this doctor, it all comes down to needing a referral from my PCP.

I called my PCP’s office today. They said they’d run it by her, but told me she usually doesn’t refer to anyone outside of her hospital network. Now, I’m completely willing to leave her practice. In fact, I plan to leave it anyway. But there’s no way I’ll be set up with someone else by Wednesday. That just isn’t possible, especially because no PCP gives a referral before having a first meeting with a patient. So now I’m worried that I’ll miss out on my big appointment and that I’ll have to put it off even longer, all because my PCP may not give me the referral.

The inexcusable part? She wouldn’t withhold the referral because the doctor I want to see is the wrong specialist for my condition or because he has a bad reputation. She would withhold it only because she prefers to have her patients seen within her hospital network. There are advantages to that, of course. She knows the physicians, the medical records are all within the same system, etc. But it is also very limiting. I’ve researched those doctors and they don’t do the treatment I want. The treatment I want is less common, but by no means experimental or unconventional.

I should be confidently awaiting my big appointment, looking forward to new treatment possibilities. Instead, I feel stress that it may not happen. Is this the medical system we deserve? How have we let it deteriorate to this point. This is simply not acceptable.

Leave a Comment » | Expectations, Frustration, Healthcare, Medication, Politics, Rants | Permalink
Posted by chronicrants

The myth of a miracle cure

July 21, 2013

Warning: This is a bit negative, even for me, so make sure you’re feeling positive and upbeat before you read it. And afterwards, go look at pictures of cute puppies or something. A picture of my favorite cutie is here, just for some balance.Pooch

I just read a book where a little boy has a fatal, degenerative disease. It was fiction, and the disease was made up, so I knew, based on the type of book, that the disease would be cured just before it killed him. And of course, it was.

My health problems are not fatal, but they’re degenerative. And there’s no miracle cure about to come fix me. The problem is, I don’t think most people understand that.

In books and movies, tv shows and plays, it so often happens that a miracle cure comes along just in time. Some researcher has a great idea, loved ones waive all liability, the cure is administered, and everyone lives happily ever after. It happens practically over night. In fact, not only does the disease stop getting worse, but they even manage to improve the person’s health, as in the novel I just read, so that they get to be completely healthy. If only, right?

After so much exposure of this sort, people start to think that this is how it works in the real world. Those of us who actually have these diseases know better, though. We follow all the research on our disease. We know who’s working on it and who isn’t. We know how much money is being spent on our disease versus others. We know if the focus is on cures or on treatments or maybe, if we’re really lucky, on both. We know if any work is being done on preventative measures or on diagnostic techniques. Some of us follow the research in great detail and others only have a vague awareness, but we all know. We know, on some level, if a promising cure or treatment is in the works or if it’s something we’ll be lucky to see 40 years from now.

We also know that even if a cure or treatment is close, that doesn’t mean it’s accessible to us. If a cure was found today, how long would it take to reach its intended target? Well, the answer varies based on so many factors, but the answer is always measured in years, not in days like in the movies. Even if you manage to get into a human trial of the treatment, and even if you manage to get the drug instead of a placebo, human trials don’t happen over night. There are so many stages that come first, including animal trials. FDA approval is needed in the U.S. And there are great risks to taking an untested drug. You know how sometimes you take a drug knowing there’s a slight chance, or even a great chance, of a certain side effect? Well who do you think gets those side effects first? Yep, the testers. It’s definitely risky.

And sometimes it’s difficult or even impossible to get into those trials. If you have to wait for the drug to come to market, it can take so much longer. But wait, don’t forget the costs! The pharmaceutical companies just spent a whole lot of money developing whatever you’re about to take and they want to get some of that money back. In the books and movies you just get the drug. There’s insurance or a rich uncle or some compassionate benefactor. Too bad it isn’t always like that in the real world. If you don’t happen to have insurance to cover the drug (and it often doesn’t cover the new ones) and if you don’t have the money to pay for it (which could easily be tens of thousands of dollars – no that isn’t an exaggeration) then you’re just out of luck. Sorry. Too bad. Go home.

So the next time someone says, “Isn’t there a pill you can take?” send them over here. Maybe this will open their eyes just a bit. There isn’t a cure, or even a treatment, for every illness. Oh, how I wish there were. Some are getting closer, but people need to trust us when we tell them if there’s a treatment coming or not. We’re paying attention. We know these things. We’re not about to be surprised over night. If and when a treatment comes along, we’ll know about it long before we’re able to take it, and we’ll be counting down the years.

9 Comments | Educating, Expectations, Healthcare, Medication, Rants | Permalink
Posted by chronicrants

I won I won I won!!!

July 16, 2013

There’s a great moment in an old episode of “Mad About You.” Jamie walks into the apartment and tells her husband that she won the big account she was working on. Then she throws down everything her arms and jumps up and down wildly, Yay!waving her arms, and screaming, “I won! I won! I won!” That’s been going through my head a lot lately.

I applied for long term disability insurance in the spring of 2012 and FINALLY last week I got a resolution: I WON! Well, ok, I know “winning” isn’t the most accurate term, but after being denied and appealing and having the appeal delayed over and over and over again, it sure feels like a major WIN.

I’ve been alternating between jumping up and down (well, figuratively anyway) and wondering if maybe I dreamed it all. Did I really win? Is it actually over? Did I really speak to my lawyer or am I just imagining it? My family and friends have been amazingly supportive through this whole ridiculous mess and this is no Boston sunshinedifferent: I’ve gotten hugs, tweets, emails, and phone calls of joy. They are so happy for me. But me, I’m still in disbelief. Could it really be over?

Of course, it’s not really over. I have yet to receive the payment for money owed. I still have to get paperwork assuring me of the ongoing monthly payments. My lawyer needs to be paid. I need to get my old health insurance back, hopefully before my next medical appointment in two weeks. Once I have the health insurance, I need to start applying for reimbursements for prescriptions not covered by medicaid. There’s a whole long list of things I need to do.

And those don’t include the worst of all: preparing for the next stage. My Social Security application is still pending, but that’s not what worries me. What worries me is that the LTD process dragged out for so long, that in a few months I will need to start the application process for the next stage of coverage! After so many months of effort and anxiety, I really want to rest and focus on my health. I don’t want the distraction of more of this bullshit.

So for now I’m trying to just focus on the win. I’m trying to remember that I succeeded. I’m trying to remember that even though I got only what I deserved (actually, less, when you consider the many hours and huge amounts of money spent on lawyers, medical records, medical visits, etc.) this is a good thing. There is more to be done, but that can wait. It will still be there next week. Right now, I need to (figuratively) jump in the air and shout: I WON I WON I WON!!!

4 Comments | Expectations, Healthcare, Limitations, Milestones, Rants, Raves, Support, Unpredictable | Permalink
Posted by chronicrants

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