I'm interested in finding a way to fight new epo restrictions...can anyone help?

[fearless]

I'm looking for advice, direction, and fellow patients / caregivers who are interested in giving back to doctors the ability to manage their patients anemia as they see fit with regards to using epogen or other medicines.

It seems like I visit here when I need help, and I'm sorry for that.  But for 3-4 weeks now I've been disabled by my anemia.  I'm trying to do training to dialyze at home with Nxtstage, and I'm wondering if i can even get through it.  So much to learn and it's every day.  I feel awful.

I want to fight, but I'm absolutely overwhelmed by the size of the battle (medical research, government agencies, etc.)

What should i do?  Where do I start?  Any other long-term, fully epo-dependent anemics interested in helping with this fight?

God bless us all.

[Rerun]

Epo won't work without adequate iron stores.  It is like an engine without gas. 

Just checking..... some doctors have hidden agendas.

[sullidog]

I want to do the same, I'm at 10.6 and I feel it's too low.

[lmunchkin]

Fearless, I would demand a copy of every lab that they do.  You look at those labs and determine if you need epo or Iv iron or anyother things. Rerun is right, they can put all the Epogen shots in you they want, but it is null if you levels of Iron is low.

I hate you have to go through this.  Do you have someone who is training with you?  They usuallly require another there!  Maybe you should ( Yes, I can't believe Im saying this) step back from the NxStage and go back to the center for awhile till you feel up to par again.  I know this is hard for you, Fearless.  Just stop the sweating it and go back in-center till they get your anemia straightened out.

You can always try it another time!  Don't be disappointed, you don't feel good, and no body here will fault you for that!  They understand, trust me!

Please, request a copy of your labs, so that you can correct the problem areas that need improvement!

Take a breather from it, it is very overwhelming, and when you feel better and up for the challenge again, then go for it!!!! At least you do have other options and that is a GOOD thing my dear!

God Bless,
lmunchkin
 

[SugarBear]

The only way I see that we can fight this new regulation set by the FDA is to demand clinical trials on dialysis patients only.  The current clinical trials the FDA is using to make these new Epogen levels is from a mixed population of patients which does not make sense at all.  Different patients have various needs, so how can we get this accomplished?

First we need new trials, but who would provided the funding as the FDA does not pay for trials.  I say we approach the makers of Epo and others like them to pay for a new clinical trial that involves only dialysis patients.  The makers main motivation would be increase revenue from more Epo sales to patients. 

Second would be doctors that do not agree with the new regulations.  Our doctors see how lower levels of Epo affect us patients making them the best to advocate for us.  Maybe they can form some kind of committee where they can take their findings to the FDA for consideration.

Third would be us, the patients.  If we start making tons of noise about this, we can gain attention to our concerns.  It could be media attention, writing letter campaigns, and choosing eloquent public speakers to inform the public of our very real concerns.

[jbeany]

Personally, I think they need to adjust the standards for men.  Males typically run a higher hemoglobin level when healthy than women do. 

Unfortunately, to give back power to the docs and the patients, we need total healthcare reform.  It's now less about health and more about insurance.  As long as that is true, we're not going to get any leverage to change things for D patients. 

[Willis]

Fearless, I wish I knew the answer. But I'm with you. One-size-fits-all Hgb levels for Epo makes as much sense as one-size-fits-all shoes.

 

[Stacy Without An E]

For the last 6 months I've been weak and exhausted.  I've been to my primary physician & my nephrologist.  Both say my blood levels are "normal" (for a dialysis patient.)  Come to find out from a member of the staff that the Medicare approved level for hemoglobin was lowered from 12 to 10.  Everyone here is absolutely right: one size does NOT fit all when it comes to hemodialysis, blood levels, or medications.  This infuriates me to no end.

[fearless]

Rerun, my iron stores are excellent, thanks to the vigilance of my doc.  They even got an older form to supply me because I'm allergic to venofer.

This is about epo.  I've been dependent on epo for many years.  Without is my hemoglobin goes down quickly and ends somewhere around 4 (although that was years ago - so who knows what it would be now?)

Blood protein level also affects how you feel.  Again, mine is excellent.  Especially after changing from PD to hemo.

But you're absolutely right - it's important to keep the iron up! 

[fearless]

lmunchkin,
thanks so much, but unfortunately this isn't about monitoring labs and making sure I'm getting adequate care.  This is about a patient (me) with an excellent doctor who keeps her labs looking great and who allows her every latitude possible to do things her way, but isn't being allowed to prescribe an adequate amount of epogen to keep her life liveable.  The reason?  Medicare won't pay for it.

i want to change that.  If I have any criticism it's that the doctors who see how poorly some of their patients are doing aren't lobbying for correction.  they have a much more powerful voice in congress that we do as patients. 

i believe there are many hidden corporate agendas which propelled this change. 

Thank you so much for your encouragement!

[fearless]

SugarBear,

THANKS SO MUCH! 

I have written down your suggestions, ideas, etc.  What you say makes perfect sense to me.  Still don't know quite how to start, but at least have some ideas about WHERE to start!

Regarding doctors: it looks like for me I'd have to figure everything out myself and then ask her to support it.  i know she would do anything to help if she didn't have to take the initiative.  It's a little disappointing, but I think it's just that it's hard for anybody who's not trying to live this way to really understand why it's intolerable.  With the overwhelming amount of patients she's trying to take care of i doubt she'd be interested in a political battle.  But I know she'd be on the right side and would likely do some letter-writing.  She's very well-spoken too.  Maybe if i can get this far enough she would talk.

Crap.  I see this is a long-drawn out fight for whoever decides to get involved.  And I'm so tired 

never wanted to be a political advocate