Jump to content

Do you want up to date information about Scleroderma? Check out our Medical pages at www.sclero.org for all your Scleroderma questions!


Having to be one's own health care advocate

  • Please log in to reply
8 replies to this topic

#1 smurfette


    Silver Member

  • Members
  • PipPipPipPip
  • 148 posts
  • Location:PA, USA

Posted 11 July 2008 - 08:59 PM

Am I crazy? Is it my imagination? I feel like it is more complicated being sick lately. I have to deal with how I feel and the meds, dr visits, tests and feeling awful some days (and admittedly I have it so much better than others so I really feel that I have no right to complain) but on top of that and trying to live my life I feel like I have to serve as my own health care advocate.
Case in point - I called my pharmacy and discovered that my insurance company decided to stop payiing for one of my meds. So then I had to call my insurance company and find out why. I need the med. It helps with my esophageal spasms. I also do not want to pay over $100 for one month's supply because I take 2 forms of it in one month and I take several prescriptions each month. Was it capriciousness on their part - or purely economic?. Well, after a few days of back and forth - they changed their mind or else they got a deal from the drug company that they must have been playing a game of brinksmanship and so now they are paying for it. I already have had to go from Zofran that worked really well for nausea to Kytril which doesn't because they got a better deal on that drug.
If I wanted to push for the Zofran I would have to get my doctor to call the ins co and claim that it was brand necessary and then fight it out. I would be put in the position of being my own health care advocate. Frankly, I do not have the energy. I take the kytril 2 at a time and hope that it keeps me from hurling. That is exactly how the insurance companies win their battles - people who do not feel well enogh to fight with them to win battles against them, even when the insured could probably triumph.
So I guess for the time being I have to stick to being a patient until my energy level gets better or else I get angry enough to turn into more of an advocate and less of a patient. Am I the only one out there who is forced into two roles?

Chocolate, It isn't just for breakfast anymore!

#2 jefa


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,325 posts
  • Location:Scotland

Posted 12 July 2008 - 01:45 AM

Hi, smurfette. I understand how frustrating it must be, but I don't think there is really any capriciousness involved in these decisions. Economic factors are a primary concern of course as it will effect the overall insurance cost. While a pharmaceutical company holds the patent on a drug, its cost will remain high. When the patent runs out, competition comes into play as generic versions can now be produced by other manufacturers and the costs will come down. In many cases, there is no problem with a generic drug or a similar drug in the same family (such as Kytril), but sometimes one drug will work better than another for an individual. You need to work with your doctor on this and he or she can write the necessary approvals in these circumstances.

Short answer: Yes, we all have to be our own advocates. Nobody else is going to do it for us. It pays to read up on your options and be informed when you are called to get involved.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 RobinAustin


    Senior Bronze Member

  • Members
  • PipPipPip
  • 32 posts
  • Location:Austin, TX

Posted 12 July 2008 - 02:22 AM

Jefa is right sweetie ... you are your own best/only advocate in SOOOO many ways. Not just fighting for the right meds but for the proper care from doctors, etc ... I think it's part of what makes "sick" people stronger than your average bear. We have to fight for ourselves all the time and until you're ill and HAVE to be your own advocate, you have no idea just how difficult that can really be. I try to look at it as a growth experience. The more I advocate for myself, the stronger I become as a person so ... when I am no longer "ill" I will have had the benefit of an experience that makes me more comapssionate and a better person all around? Somewhere in there is a logic I can live with :)

Good luck with the meds and keep fighting ... you know which meds work best for you so don't give up. Call your doctors and enlist their help with fighting the insurance people ... maybe someone on this list is from the same state and has fought with your insurance company already and knows some inside info?


#4 annkd


    Silver Member

  • Members
  • PipPipPipPip
  • 172 posts
  • Location:Sacramento, Ca.

Posted 12 July 2008 - 04:55 AM

Hi Smurfette - when someone asks me if I work, I tell them "Yes, I'm a profesional patient". - Ann

#5 barefut


    Platinum Member

  • Bloggers
  • PipPipPipPipPipPipPipPipPipPip
  • 1,159 posts
  • Location:NW Washington

Posted 12 July 2008 - 05:50 AM

Hey Smurf,

No you are not the only one. I have often thought there ought to be a social service that provides patients with free advocates in order to help them with this very thing - as well as with finding affordable health care in the first place!

While whining to my insurance agent and pleading common sense, she stopped me in mid sentence and told me I'll only make myself crazy because insurance companies don't operate on logic. I read a help wanted ad in the classifieds for an administrative assistant with this same insurance agent which required a "sense of humor".

#6 Nina


    Silver Member

  • Members
  • PipPipPipPip
  • 125 posts
  • Location:Claymnont, DE

Posted 12 July 2008 - 09:41 AM

Hi Smurf ~~
I am right there with you. It took me so long (and I still have to work at it) to accept the fact that no one, doctors included, is going to worry about me and my health problems. We have to educate ourselves and talk to others, as in this forum, and make sure we know what is going on with our bodies. And the most important part, we have to speak up for oursleves. I should say, speak up and stand up ~~
I've been through the whole thing with Nexium, insurance was not going to cover it, and then my doctor said I needed it twice a day, you should have heard them on that one...
Lots of my meds are not covered because I have Medicare only ~ my latest was "Adivan" (not sure of spelling) ~ it is to help with my anxiety. NOT covered ~ I couldn't believe that. Anyway, I'm just not at a place right now where I can fight, so I'll have to rest up and gather my strength and go at them again at that time.
I guess my point is ~ believe in yourself, get smart, and don't take NO for an answer. This is a tough world we live in and for the most part we are in it alone.
Well, with the exception of the support of this wonderful group here. Isn't it wonderful to know you have this to turn to? Thanks everyone for being here!!
Much love,

#7 smurfette


    Silver Member

  • Topic Starter
  • Members
  • PipPipPipPip
  • 148 posts
  • Location:PA, USA

Posted 12 July 2008 - 09:59 AM

I do appreciate this forum for their support and understanding and for reinforcing the fact that I may be crazy - but I am not wrong.

When I can gather my resources I may yet fight to get Zofran instead of Kytril for my nausea, but right now I just want to try and function and work and make it from day to day. Again, thank you all for your support and I hope that all of you are getting what you need in the way of care to feel well.

Chocolate, It isn't just for breakfast anymore!

#8 HouckRN78


    Bronze Member

  • Members
  • PipPip
  • 15 posts

Posted 14 July 2008 - 05:29 PM

Smurfette - First, let me say I love the nickname! I had a variant of it through high schoool. As a nurse I am dismayed to see that nurses have lost their position of patient advocate in so many settings. Patients have a very difficult time trying to navigate both their medical conditions as well as insurance company requirements. Unfortunately, I have also found most of the responsibility lies with the patient these days but it wouldn't hurt to get to know your doctor's nurse. Or even better, to find a good friend to accompany you to your office visits and help with the aggrivating red tape/forms neccesary to ensure you receive the appropriate care. Best wishes to you!

PS Nina - I know quite a few medicare patients on Ativan (generic is lorazepam). You really need to look into why they won't cover it or the generic. Best of luck!

#9 razz


    Senior Silver Member

  • Members
  • PipPipPipPipPip
  • 344 posts

Posted 15 July 2008 - 02:26 PM


You're not alone feeling like you have to fight for yourself and not having the energy to do it. If possible, take someone with you to your doctor's appointment and have them advocate for you. Some hospitals have patient advocates where they will assist you in dealing with your doctor(s) and/or insurance company. On the other hand, if you're not satisfied with the medical service you're receiving from a hospital or clinic, contacting the insurance company's manager will usually put the wheels in motion. Insurance companies want to make sure the patient is getting the full service that the insurance co. is getting billed for.

Feeling sick and then having to fight for yourself is hard. Save your energy for the important issues and don't sweat the small stuff.

I hope I gave you some helpful hints.

Smile. :)

Live well, Laugh often, Love much