Why I'm switching back to the HMO

(Caution! This is a rant where I'm just getting a lot of my frustrations towards my insurance company off my chest. I know I'm fortunate to have health insurance at all, but still things should be easier than this.)

I'm on hold right now with my pharmacy. I'm trying to get my next sandostatin shot set up, and it's so complicated.

Yesterday:

• Call the pharmacy to order the sando.
• Because sandostatin is considered a "specialty" drug, I have to be transferred to the specialty pharmacy.
• There's no prescription on file, so I called my endocrinologist's office to have them fax the prescription in to the pharmacy

Elapsed time, half an hour

Today:

• Call the company that provides the nurse that will inject the medication to schedule. They can't tell me when my appointment will be, they have to call me back to let me know what time they can do it.
• Call the pharmacy back to check on the status of my order from yesterday.
• The prescription was received, but now the insurance has to approve it.
• Call the insurance company, they need the endocrinologist's office to call them to approve it
• Call the endocrinologists office, left a message asking them to call the insurance company

Today's total elapsed time on the phone, 1 HOUR

The sandostatin order is still not complete, and if it isn't shipped today for delivery Friday, I will have to wait till Tuesday for delivery because they don't do Monday deliveries (no one can send it out on Sunday). I was supposed to have my injection yesterday but I've been traveling and I won't be home till Saturday night.

This kind of thing is typical for all my medical dealings. I am doing the phone tag rounds right now for my upcoming colonoscopy as well. In the past, this is what would happen:

• Hospital sends me bill for full price of procedure/medication/whatever
• I call hospital billing for explanation, they tell me it is because the insurance denied/did not respond to their requests
• I call the insurance company to tell them that I'm being billed, and insurance should be covering it
• The insurance company sends a request to my doctor's office for more information
• Doctor's office did not receive/respond, so I have to get the forms from the insurance and fax it to my doctor's office myself
• Hospital sends another bill showing that I still owe the full amount
• I call the insurance company to ask about the status of the doctor's forms
• The insurance company tells me that they did receive the completed forms, the system just hasn't been updated yet
• They update the system and authorize payments to the hospital
• Call hospital with the insurance company's payment confirmation numbers

Of course, it's not as straightforward as I've described above. There is usually some extra following up along the way. Imagine long hold times, phone trees (press 1 for ....), repeating the same information over and over (account numbers, security verification questions, contact info, etc). And for what? I still have a huge deductible and multiple co-pays that do not count toward

I miss things being easier at the HMO- everything was so integrated and I could even order my refills online, then just pick it up. No approvals and authorizations between the doctor, the insurance, and the pharmacy to juggle. I hear things are also better in countries with nationalized healthcare programs. FINGERS CROSSED for healthcare reform! Improve patient quality of life!

Update: I just got off the phone with the insurance authorization people and they got the information they needed from my doctor and now they are waiting for their medical review people to look at it. The pharmacy had told me earlier that my order had a "STAT" priority, but the insurance authorization people said that my review was on the normal timeline. It is now on the STAT review timeline. Elapsed time for today is now TWO HOURS!

To say something or not?

I've always wondered if I should say something to strangers I see that exhibit signs of acromegaly. I have never actually said anything because I worry it might come across as rude, or it might be unnecessarily alarming, but this article is giving me second thoughts about holding my tongue:

http://www.guardian.co.uk/world/2009/oct/28/spanish-women-guardian-angel-disease

I'm curious, have any of you ever been approached by a stranger about your acromegaly, or have you ever approached a stranger (or friend or loved one, even) that you've suspected to have acromegaly? If so, how does one go about bringing it up?

What Helps? (Part 2)

Remember the post a few months ago about little tips to help deal with acromegaly? I want to highlight a few tips that have come up since the original post.

1) One thing that seems to help ALL the symptoms is to AVOID STRESS. Everyone agrees that we should avoid stress, but how? Everyone has their own way to deal with it, and some are more constructive than others. Prayer, meditation, exercise, stretching, massage, proper sleep, therapy, change of environment, whatever works for you- just don't let stress build up! Stress has a real effect on your body, just like toxins from the environment do. I'm convinced there is a link between stress and acromegaly.

2) Become an advocate. Sometimes when I'm feeling down and a little sorry for myself, I find the best thing I can do to pull myself out the rut is to think of a way to help others (for example, I hope this blog helps others). You can share your experience, educate those around you, raise awareness, and provide support for others that are in need. I feel so much better if I can help just one person avoid unnecessary suffering. I firmly believe that discoveries about acromegaly are going to come from within our community, as a direct result of our own activities. Because our disease is so rare, we can't rely on the rest of the world to fix things for us. We have to work to make things better ourselves!

3) FIND FRIENDS. I don't know where I'd be right now without the support and insight of my fellow acromegaly bloggers. I still remember the first time I "met" someone with acromegaly (it was Jason, via email), and what a thrill it was to stop feeling alone, and to have my experience validated. I recently got to know someone locally with a chronic rare disease, and while his disease is not the same as acromegaly, we were able to share our experiences and give each other tips and encouragement (actually, talking to him is what inspired this post). Having someone who truly understands (not just imagines what it must be like) makes such a difference. If you haven't yet checked out some of the support groups (see the sidebar to the right), you should!

Clinical Trial Reject

I just got of the phone with my endocrinologist- my bloodwork from last week came in and my IGF-1 and Growth Hormone levels are too high for me to qualify for the clinical trial. I have to admit, I'm pretty disappointed. I was really excited about trying out the new treatment, because I really thought it would make my life so much better - I would almost be like a normal person, because I wouldn't have to think about my disease so often. Both the endo and I knew that the current treatment (30 mg Sandostatin /4 weeks) wasn't quite cutting it, but I was hopeful that the experimental thing would work better. Now I don't even have the opportunity to try it out.

The morning I went to go in for my blood draw, I was running late, I had just finished working over a really stressful weekend, and I went to the wrong room in the hospital and couldn't find the nurse I was supposed to meet. I wonder if all of that stress elevated my IGF-1 and Growth Hormone levels.

Acromegaly, Aging, and Loss

I was reading one of my favorite advice columns the other day, "Since you asked," when I found a letter that struck a resonant chord with me. The letter was written by someone who is concerned about turning 50, facing a rare disease, and basically realizing that he's not 20 anymore. I'm not that close to being 50 years old, but reading the letter reminded me of dealing with acromegaly because for me it has represented the loss of a more carefree and energetic time.

I'm never sure if I'm feeling a certain way (tired, achy joints) just because of the natural aging process, or if it's a symptom of acromegaly. I think about the misinformed people who abuse human growth hormone hoping it will act as a fountain of youth and I shake my head because for me I feel like it has only aged me.

I don't want to give away the whole article, but the advice columnist wrote, "You also sound like you are grieving for your youth," which really struck home. When I get sad about acromegaly, I am grieving for the life I had before acromegaly.

Anyway, I don't always feel like this, but it certainly captured the essence of what I think about when I'm feeling down. I loved the columnist's advice, but I was wondering if you, my fellow acromegaly compadres, had any advice of your own for facing similar times. Please let me know what you think!

http://www.salon.com/life/since_you_asked/2009/10/06/turning_50/index.html

"There is a clear need for better treatments for this niche and difficult to treat disease"

Here's a little ray of hope for those of us who are interested in new treatments becoming available - there's a new drug being developed called ATL1103 that just passed some level of development, and will probably start a human clinical trial in 2010. Sounds promising!

ATL1103 is a second-generation antisense drug that targets the growth hormone receptor (GHR). By blocking the action of GHR, ATL1103 inhibits production of insulin-like growth factor -1 (IGF-I) from the liver thereby reducing its levels in the blood. GHR is a clinically validated therapeutic target in the growth disorder acromegaly (excessive growth of parts of the body and organs including the liver, kidney and heart) where the goal of treatment is to normalise IGF-1 levels in the blood. There is a clear need for better treatments for this niche and difficult to treat disease with the size of this market nearing US$1Billion per annum in drug sales.

-From some press release, via the RSS news feed "Acromegaly News" in the sidebar

Getting There—to the End of My Journey—This Time Around

Please see my new post on my recent transphenoidal surgery to remove a residual pituitary tumor. I initially posted it here but thought it wiser to just share this link: http://acromegalicprincess.blogspot.com/2009/10/getting-thereto-end-of-my-journeythis.html. Thanks. There is a cure for acromegaly as excision of the adenoma can result in remission for some of us. God bless us all.