Hi, GM!

You obviously have to have a prescription for "epo."
Your doctor must also have prescribed this for other people.
Why not ask him/her for a supplier of this drug?

I used to get through a special order with Walgreen's.

Peace and Blessings!
CoachRichie
http://www.InnerGameOfPKD.com

GM,
Any form of epogen requires a prescription. There are continuing discussions within the nephrology and cardiology communities about what level of HGC and HCT is best for kidney patients (both pre-dialysis and during dialysis); what we patients want and what the studies show are safe are not necessarily the same).

There are multiple brands, Procrit, Epogen and Aranesp (all forms of the articial hormone erythropeitin, with Aranesp being the longer-acting version compared to the others). If you aren't able to find the medications locally, talk with your insurance company about their mail order pharmacy services. Reputable mail order pharmacies use dry ice to keep the medications cool (but not frozen) and can safely ship to very rural parts of the country without risking the medication warming up. My mother-in-law lives in very rural Kentucky (blacktop roads went down in the mid 1990s) and she got her injectable medications shipped via mail order with no problems whatsoever. The mail order pharmacies also generally cost less; generally with a 3-month prescription costs the same as a 1-month prescription from a regular pharmacy. In addition they serve a very large population and multiple insurance companies, so they have a larger and wider formulary of medications at a lower negotiated price. Alas, there are no generics for the epogen type medications at this time.

If you do not have insurance and your doctor has prescribed epogen (or an equivalent), please talk with the nephrology/dialysis nurse. They can get you access to phamacy discount programs, NKF prescription support programs, and/or other possible sources for all your renal medications. Also talk with your doctor; he may be some alternatives to epogen such as increasing your iron levels and ensuring you have no other forms of anemia (B-12, b-6 or folate) before resorting to full cost epogen treatments.

Best wishes,
Ruth

Hi
Is this for yourself or a relative?

I was prescribed this drug in the form of recormon, and it is free for me in my country though Very tightly regulated and restricted because of the expense and the potential for abuse by athletes. In addition, my Hb levels are monitored very carefully by my Doctor and doses adjusted constantly. It is dangerous if your Hb gets too high (they try and keep mine below 125) because of the risk of blood clots on this recombinant hormone. For that reason I have had to stop taking it until my HB gets down to 105 because I overshoot otherwise.

I appreciate the huge difficulties you face getting medical care where you live but would caution against trying to self-medicate with this drug if you find a source outside regular channels.
In addition you would be wasting your money unless your iron levels are high enough for it to have any effect.

It must be very frustrating to know that a medicine could help you but to not have access to it. Even in NZ I had to jump through lots of hoops wait a couple of years and get very low before I was authorized to receive it and many pharmacies just don't have it.

I said I have a son with a kidney disease! He is on dialysis and is anaemic. He has been injected this medicine before. I don't do the injection, they do it in hospital just after dialysing. The problem is, I have the prescription but no injection to BUY!!!!!!


GM

I am so sorry about the confusion. I made the dreadful assumption that you lived in my country (the US) and were dealing with the same medical system most of us deal with. However, you live in South Africa and your medical system may be very different from ours. In the US, once we're on dialysis, if the doctor orders epogen, the arrangements are made through the dialysis center to place order for epogen and it is through the dialysis line at some point during dialysis and billed as part of the dialysis session, which is then billed to either our private insurance or Medicare (government insurance). For those of us on epogen before or after dialysis/trasplant, we get a prescription and go to our local pharmacies to get it (it may or may not be a special order depending on the pharmacy). For us, epogen is expensive, even with insurance.

I do not know how it works in Zimbawe. Can you talk with you son's dialysis nurse or his social worker? They may know of some sources that have some medication or patients who no longer need theirs (nurses are amazing sources of information). If your son is new to dialysis, the nurse or social worker may have a better process on what to do with these particular prescription and how to ensure you son gets his medication. It may be as simple as giving the dialysis nurse or social worker his new prescription (keeping a copy for yourself) and and they order it (having a much larger requirement because they have mmore patients, it's much more likely they can get refrigerated medication quickly than if the patients order one by one, and then keep it refrigerated and on hand to give to your son durign his dialysis sessions. This way you would no longer have to search for your own single source yourself; the dialysis center makes all of the arrangements. Whatever the case may be, they should be able to talk you through the process as it applies for you and your son and if you still need to buy the prescription and bring it to the dialysis center with him for his sessions, be able to tell you where to find it.

I agree, the cost of the medication is outrageous, especially the market cost compared to the negotiated cost for large insurers or other agencies versus what the private patient pays. There's a new medication, similar to the others on the market, so hopefully that will drive the prices down, even if just a little.

I hope you get answers to your questions soon.

Best wishes,
Ruth

Ruth,

Thanks for the reply. The fact is, this medicine is not available in Zimbabwe, period! What we need is an NGO, philanthropist or some such who can donate the medicines. The nurses don't know ZILCH either.

You get certain medines thru whispers? I managed to get this connection thru a Jehovah's Witness member after going round in circles.

My son already has a kidney donor but we can't go forward because of the money issue. Now, it looks like he is going to be KO'd by the unavailability of this injection!
It would have been laughable had it not been such a grave matter--no pune intended!

GM

Oh GM, I am sorry to hear of this situation. Gosh, I know that at least I have insurance to cover this, and am able to get all of the materials to do the injections myself. I wish I knew what could be done..... far away in Alaska. I at least want to say, I hear you..... and am praying that some way, some how, there is help.

Blessings to you
Heather

GM,
I am so sorry to hear about the situation with your son. Is there any chance or any benefit of getting him to South Africa for the surgery or is he too weak to travel? Once he's transplanted you will have the cost of the immunosuppressants in order for him to keep his kidney.

Your situation reminds us of how fortunate we are to have the resources we have and how much we take those for granted. How I wish we could share them with you right now, but alas, Epogen doesn't travel well from the US to Zimbabwe even packed in dry ice.

May peace and blessings be with you and your son,
Ruth

Thanks for ALL your concerns. I am touched.

Just spoke to one guy who supposedly manages to get the injection. He gets it from the UK. The supplier has relatives in Zim whom he contacts and they in turn place an order with the UK-based supplier who has to find someone coming to Zim so he can give him . . . ha!

You see why I am looking for a group that won't face these hurdles? There hasn't been anything now for months! The last consignment was apparently a gift from the Cuban doctors to a group who are being dialysed from the capital. We are in another town, so we did not get . . . or they did not know about us?

But, with your prayers, support, and concern, we shall OVERCOME!!!

Thank-you all and God bless.

By the way, my son attends school now. On the days he has to attend dialysis, he attends school for about three hours, and that is twice a week. He is not THAT weak to travel!

GM

GM

I am sorry to hear about your son. I really hope that you find some way to get this medicine. I see you can get small battery free pouches that are water activated to keep insulin medicine cool for up to 4 days. So maybe that would work well if you found someone who could get it to you from SA .

If you were closer I could post you a vial! Who knows how long it would take to get there....and customs would probably intervene.

It is good at least that your son is receiving dialysis treatment. Surely there must be a way.

Best wishes. My thoughts have been with you all day.... trying to think of a way to help you.

I hope I find u ALL well! I managed to secure six injections--one injection every other session. Thank-you for your prayers. There are two hospitals in my town that do dialysis. My son's school is near one of them . . . and it happens to be a 'private' hospital.

That is where he does his dialysis. unfortunately, the cost of the kit is no laughing matter. I would be glad if someone donated a whole kit.

The Government hospital is crowded such that there are night sessions! i want my son to go to school. He has to learn to survive on his own. Our schools are not the best at the moment, so I have to sacrifice.

CoachRichie, I do have 'prescriptions for the erythropoetin'. I can send u one if u want to see it. Well, we all shall live . . . and die someday.

Peace be unto you all.

TenTen

Hi Ten!


I have no need to see your prescription! :-)
I'm just glad that your son is doing OK so far.

Yes. Dialysis is difficult when you are trying to live a productive life.
But, what choice is there?

Peace and Blessings!
CoachRichie

TenTen,
I'm so glad to hear you found a source for at least 6 injections. Hopefully that source will continue to get more Epogen (or Procrit or Aranesp, all are brands of the same type of medication, although used in different doses. Aranesp has an entirely different dosing regimen; it's dosed in mcg and is generally longer lasting...and generally more expensive).

You and your son are still in our thoughts and prayers.
Ruth