Author Topic: disappointed (Read 16097 times)

omeco · « **on:** September 16, 2014, 03:29:32 am »

Disappointed, because I would have my first session at the liver doc tomorrow in Antwerp, to get some investigations to start a free 12 week trial with the new medicines. Yesterday I got a phone call that the appointment is cancelled, because the farma company did not have the right paperwork and they have to produce new paperwork before we can start. They don't know exactly when we can start now and they phone me again in about two weeks.... As you can understand we were really looking forward to start this trial. It felt like shit yesterday. Anyway, hopefully we can start in about two weeks then

willie g · « **Reply #1 on:** September 16, 2014, 08:10:57 am »

omeco,that really stinks because you get over part of the worrying when you get started but don't fret it same thing happened to me, i was all ready too and i was waiting and i was waiting, so i called and said'hey i thought you said my meds would be here any day!'' they then told me whoever had done my paper work had forgot to put my geno type down,so i told them i have it on some form here and id fax it to them , they then told me the dr. would have to do it, then i told them this paper which i have IS from the DR. and it is SIGNED by him.sorry sir but that's not the way we do things they said. when i hung up of course i called doc. and they confirmed what i said and in about two weeks i was back on board, for two days i couldn't sleep etc. and was not a happy camper but once i realized there really was nothing i COuld do i took off and headed for woods and hung out with nature and my creator. ya know now that i look back i am glad i did because i got to enjoy 2 more weeks for the summer.[the combo i am on i can not be in the sun too much because i get the side effects,, so hey trust me you will be soon on board and in the mean time ENJOY the FALL weather for a few more weeks and who wants to do much when it really starts getting col, cold. so it will be good timing. i know your anxious but time moves quick and in a week give them a NICE call and just ask are we still on course everything OK? put a date on your calender when your going to call . that helps because then you will have a plan and wont be worrying as much and you wont be over bugging them. I called back that second day with an attitude and i don't think they liked it.lol SO go have some fun! ''just'' Willie g ''

iana5252 · « **Reply #2 on:** September 16, 2014, 11:08:38 am »

Hang in there Omeco. It sounds like you have a path to getting on treatment which is fantastic. Fingers crossed it all comes together for you in two weeks.

- Ian

Picnic · « **Reply #3 on:** September 16, 2014, 03:28:36 pm »

Many of us have been waiting for years to get started on the new meds. I am sure the anticipation is killing you. I am sure you can wait for a few more weeks. I wish you the best. I waited 20 years for this new medicine and now I am at week 6 of 12 and counting. My prayers are with you . Please let us know when you start.!!

omeco · « **Reply #4 on:** September 16, 2014, 03:48:56 pm »

Thank you all for the concern.
I think this is a big mistake from the team that's arranging this trial.
First they make you very happy with the news that you probably get rid of this horrible disease and a week later they destroy your dream, dokters should think about peoples emotions before they act.
I was already thinking about very angry phone calls, but I need them, so I better stay polite
Co

omeco · « **Reply #5 on:** October 03, 2014, 02:48:46 am »

Update:
No news. Still no green light for the trial.
Almost 4 weeks sober

Roger McGuinn · « **Reply #6 on:** October 03, 2014, 02:51:52 pm »

So sorry to hear of your disappointment, but you will get through it! I myself went through perhaps 4 of these sort of disappointments, and though each one made me a little more pscho, it did finally happen., and I'm one week into the therapy! I too went through every imaginable disappointment, and everyone of the screw ups was someone else's doing, but it really doesn't matter in the long scheme of things, because, the medication will happen, and the main thing to remember is to keep the stress level down to a minimum, and do everything possible to amuse yourself while waiting! The time will crawl, or seem to, but keep yourself as occupied as possible. This too will pass! Let us know how it goes and we will even listen to you when you feel like you have reached your breaking point! Stay positive, negativity only breeds more negativity, which actually creates real physical problems, but you probably already know that! Stay tough, let us know, and don't be afraid to be good to yourself!
Peace, love, and you will do it! You have friends here that all care, and have seen it all, too!

willie g · « **Reply #7 on:** October 04, 2014, 12:55:08 am »

4 WEEKS sober,, that's a big thing omeco,,, you have two birthdays to celebrate now,.. cheer of the month goes to omeco ''just'' wilie g

Tess1971 · « **Reply #8 on:** October 04, 2014, 04:11:49 pm »

Is this a trial where some will be taking a placebo?

omeco · « **Reply #9 on:** October 05, 2014, 03:49:11 am »

One on 600 gets a placebo, but you get the real medicines for free afterwards when it is you

lporterrn · « **Reply #10 on:** October 05, 2014, 06:06:37 pm »

Congrats on 4 weeks of sobriety Omeco - that is huge. What a gift you are giving to your liver and your future.

omeco · « **Reply #11 on:** October 17, 2014, 06:44:00 am »

^{Omstreden medicijn hepatitis C mondjesmaat vergoed
Lucien Hordijk
woensdag 15 oktober 2014, 16:45update: woensdag 15 oktober 2014, 17:43

Sovaldi, een effectief maar zeer duur medicijn tegen hepatitis C, wordt vanaf november voor zeer urgente patiënten vergoed door de zorgverzekeraar. Dat schrijft minister Edith Schippers van Volksgezondheid in een brief aan de Tweede Kamer. Volgens schattingen gaat het om niet meer dan 1,5% van de patiënten die mogelijk baat zouden hebben bij het middel.

Het middel zal voorlopig vergoed worden voor naar schatting 800-900 chronische patiënten die aan hepatitis C lijden. Het gaat om patiënten die zeer ziek zijn en/of zonder Sovaldi mogelijk zouden komen te overlijden. Het ministerie schat dat er zo'n 20.000 - 30.000 patiënten in Nederland zijn die baat zouden kunnen hebben bij het middel. Volgens een woordvoerder van de Nederlandse Leverpatiënten Vereniging ligt dat aantal aanzienlijk hoger, tussen de 60.000 en 120.000. De patiëntenbeweging zegt desalniettemin blij te zijn dat het middel op korte termijn voor de meest hulpbehoevenden beschikbaar wordt gesteld.

Korting

Sovaldi wordt door middel van een zogenoemd financieel arrangement met fabrikant Gilead beschikbaar gesteld aan een klein aantal patiënten. De minister schrijft een openbare korting van 14,6% van de gebruikelijke prijs bedongen te hebben. Daarnaast zou nog een andere korting zijn overeengekomen, maar die wordt door het ministerie uit concurrentieoverwegingen geheim gehouden. Geneesmiddelenfabrikanten willen namelijk niet dat andere landen op de hoogte zijn van de volledige geleverde kortingen. De vertrouwelijke inkoopkortingen gelden als controversieel omdat ze internationale prijsvorming op basis van vraag en aanbod in de weg kunnen staan. De behandelkosten bedragen volgens het ministerie per patiënt tussen de € 48.000 en € 98.000 per kuur.

Duizenddollarpil

Fabrikant Gilead heeft met Sovaldi voor internationale discussie gezorgd over uit de pan rijzende geneesmiddelenprijzen. Zo berekende de Amerikaanse krant The Washington Post dat als alle Amerikaanse patiënten die baat zouden hebben bij Sovaldi het daadwerkelijk toegediend zouden krijgen, de totale Amerikaanse geneesmiddelenuitgaven in één klap verdubbelen van jaarlijks $ 300 mrd naar $ 600 mrd. Sovaldi wordt in de VS 'the thousand dollar pill' genoemd omdat het medicijn per tablet $ 1000 kost. Een kuur kost in Amerika zo'n $ 84.000.

Spanje

Ook in Spanje is door de introductie van het middel recent een discussie losgebarsten over de prijzen van geneesmiddelen. Zo zou het middel voor zo'n vierduizend patiënten beschikbaar worden gesteld, terwijl er meer dan honderdduizend mensen behoefte aan hebben. Critici stellen dat het middel voor een groot deel met publieke middelen ontwikkeld is door onderzoekers aan de universiteit van Sussex.

Sovaldi leverde producent Gilead het eerste kwartaal van dit jaar $ 2,1 mrd op, bijna de helft van de totale inkomsten van het bedrijf voor die periode ($ 5 mrd).}

I'M almost sure nobody understands this quote, but roughly it says that the Dutch assurance will pay for the medicines in some heavy cases. As a matter of fact I'm paying my assurance in Holland, so now I'm gonna try to go to a Dutch doctor and find out if they want to pay for me. In Belgium there is still no news from the paperwork to start the trial..... Waiting. Waiting. Waiting....

lporterrn · « **Reply #12 on:** October 17, 2014, 10:56:34 am »

Omeco - Waiting is the same in all languages. We wait with you.

omeco · « **Reply #13 on:** November 07, 2014, 01:45:25 pm »

Yes!! Next Thursday the trial starts!

sunrise · « **Reply #14 on:** November 08, 2014, 02:11:09 pm »

Best wishes to you !! Hope you feel better.

2Blave · « **Reply #15 on:** November 10, 2014, 10:49:17 am »

Hi. Omeco. I feel your pain. Have been dealing with expired authorization due to delay in start date (On my Dr.'s advice.) Have been dealing with this issue since mid Oct. Don't know where the breakdown is but...I just got off phone with Gilead's patient support group: mysupportpath.com or 1-855-769-7284 in the US. I don't know if they are available internationally. Maybe worth a try. What a God send they are. They were wonderful and are going to contact pharmacy, Dr.'s office, and insurance company. I feel so relieved. Maybe they can be of further support to you too.
BTW, congrats on your 4 weeks. Awesome. We are in this together.

2Blave · « **Reply #16 on:** November 10, 2014, 11:36:46 am »

Hey Omeco. I'm pretty new to posting to forums. Just noticed that you originally posted in Sept. You must have started your treatment by now. Hope all is going well.

Forums Index

Welcome

Author Topic: disappointed (Read 16097 times)