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  cherylbiermann | Meetings | published about 1 month ago | Originally written in English Passing on the Torch

  Crazy March Madness here in Missouri again. :) Baseball started with a new team, kindergarten testing coming up and someone "forgot" to give us the permission to join the Jr. National Honor Society, (anyone want to bet he didn't want to stay after school any more?), not to mention this wonderful spring a month and a half early! Bill is off tonight with the St. Louis Astronomical Society volunteering at one of St. Louis's premier children's hospital, St. Louis Children's...how cool is that going to be for the kids? Telescopes on the hospital's upper level garden, can't wait to hear the description! Cardinal Glennon is Nathan's hospital and is not quite as flush with dollars, but they are getting a playground.

  Saturday evening we held our eleventh annual Trivia/Auction to benefit The Foundation for Children with Atpical HUS. This year had a positive development as Nathan's cousin, Jessica, took over the planning, organizing and even 100 trivia questions, (very stressful part of the job involving lots of googling), and the rest of them ran it all night! After the first 5 minutes people quit asking for Fred, (our old MC) and sat back and enjoyed the antics of Nathan's cousins, Andrew and Stephen.

  It was fun to sit and watch them bloom! We are so fortunate to have had this time off from the stress and worry...and even have an offer to help us get enough donations for an oral auction for next year. (This year we did not have this option for the first time.) I guess that shows us, the oral auction was something people looked forward to. Sometimes it's hard to tell until you don't do it!

  This year we were able to have t-shirts for the volunteers, which was nice, but Nathan was very embarrased about his "ugly" face on the shirts...I guess he won't be wearing his to school any time soon. :)

  I'd like to encourage anyone thinking about doing a fund raising event to go for it! As this year proved, kids can over achieve when we least expect it...(well I guess they aren't really kids anymore but college students). Or, like us, maybe someone is willing to have the torch passed on to them, if even for only a year.
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    robpleticha published about 1 month ago | Originally written in English

    Hey Cheryl,

    It's great to hear how your entire family supports your and Bill's efforts. One day, Nathan will appreciate the t-shirt. Where does the funds raised at the event go? To the children's hospital?
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    Mireya published about 1 month ago | Originally written in Spanish

    Hi Cheryl and Bill work so hard for ahus patients¡¡¡ congratulations
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    cherylbiermann published about 1 month ago | Originally written in English

    Oh no, here in the states, our children's public and private hospitals are basically rolling in the dough! For instance, CG, which is non-profit has lots of support, both in the public and private arenas. Even scouting groups visit with gifts they've collected at Christsmas and Easter. Cardinal Glennon also provides a lot of service to the poor, but the groups, especially the Catholic church's various organizations do region wide fundraisers a few times a year. So the money we collect, benefits The Foundation for Children with Atypical HUS 100%. We have very little overhead so nearly 100% of the profits go to the foundation, most of our family contributes to event and cosiders what they've purchased as part of their dontation and won't take reimbursements! We are extremely blessed with our family, and we are many!
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  Lenwood | published 3 months ago | Originally written in English PROGRESS IN MAKING ECULIZUMAB AVAILABLE IN EUROPE

  It is now some three months since the EMA gave a positive approval to Soliris for use in the treatment of aHUS in Europe.

  In the forum about the aHUS Patients Support Group I have explained the position in the UK, and in particular England, for deploying the use of eculizumab .

  But what is happening in France or Germany or Belgium or Spain or Portugal or Italy or any of the European Member countries?

  Who is making the decision for them?

  When will it be made?

  Are there patient groups in these countries participating in the decision?

  Can the patients groups learn from each other about getting the right decision?

  Is there a need for european aHUS patients group alliance?

  Could anyone tells us what is happening for them?
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    LindaBurke published 3 months ago | Originally written in English

    It is vital for rare disease patients, researchers, and medical personnel to share information and insight in a collaborative network that seeks answers and ponders solutions to the benefit ot others. A good start for aHUS-UK is social media outlets throughout Europe....something that takes time and effort, but an organized plan would help divide targeted outlets that might yield partnerships. Use of our associated member organizations such as AIRG in France and ASHUA in Spain might be a good starting place as well, particularly on their aHUS Facebook pages.
    Thanks for all you do for aHUS patients in the UK!
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    cherylbiermann published 3 months ago | Originally written in English

    Len, I think you have made a great start in Europe, with individual countries forming groups, but I also believe your voices will have greater impact banding together. Just as Eurodis is comprised of different nations and has gained respect and is looked to as an expert in rare diseases. A European group of aHUS members united may have more impact on individual countries' decisions as well. You can and should also retain your individual groups as well. Wonderful suggestion, I'm not sure how we can help facilitate this, but by all means, please let us know if there is anything we can do to help.
  • 
    Lenwood published 3 months ago | Originally written in English

    Thank you for your reply Nicholas

    “PIP” is an issue here too and the cause of some debate!!

    As all European countries’ health systems will differ in how they are funded and which sector delivers the health care, so the decision on using a specific medicine, like eculizumab, will vary.

    Indeed in the UK there are differences between England, Scotland, Wales and Northern Ireland with only England currently considering an application for national funding and provision of eculizumab.
    If agreed eculizumab will be given free to any aHUS patient in England whose clinical needs demand it to prevent renal failure or to support a kidney transplant.

    The tables below summarises the process for England and my understanding (which Nicholas can correct) for France so far:
    ENGLAND
    Application made by- Prof. Tim Goodship- A specialist Renal Consultant
    Alexion –drug manufacturers
    Input by Patients- Yes
    National aHUS Patient Group- Yes-aHUSUK
    Evidence evaluated by- AGNSS- an independent body of Doctors and Experts
    Decision by - Minister of Health
    Commissioner / Buyer- NHS England- National Commissioning Team
    Clinical Guidelines- Renal Association – professional organisation
    Delivered by - NHS hospitals in England
    Cost to patient - Free for life

    FRANCE
    Application made by- Not known?
    Alexion?
    Input by Patients - No
    National aHUS Patient Group- AIRG?
    Evidence evaluated by- A Board of Doctors and Experts called ?
    Decision by - The above board?
    Commissioner / Buyer- Ministry of Health
    Clinical Guidelines - ANAES*
    Delivered by - Any renal health care provider**
    Cost to patient - Free for Life

    *temporary treatment protocol for eculizumab in place
    ** drug provided free by manufacturer on compassionate grounds

    As a start it would be interesting to see the variations of the above table for each European country; and then based on the answer to “input by patients” the need for an alliance of aHUS patients/Patient Groups in Europe can be considered.

    Particularly as in the near future there will be a coordinated Rare Disease Plan for Europe in which Rare Disease Patients Groups will become a recognised “third partner” with Government and the Medical Community in health care.

    Thanks also for the supportive comments by Linda and Cheryl.
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  Lenwood | published 6 months ago | Originally written in English UK PATIENTS AND FAMILIES SUPPORT GROUP

  Hello

  Thanks Nicholas for directing me to this community. Already as with the Foundation for children with aHUS site I have found much information to absorb.

  It must say something, either about the global nature of aHUS ,or the slowness of the UK to catch on, that earlier postings about the conference in Newcastle in June should be posted on a european site by someone from the USA!!.

  Anyway a new UK organisation may help to remedy that in future.

  Out of the conference in June came two UK organisations

  - aHUS Action which is a campaign group set up to get political support for the national funding and commissioning of treatment for HUS (including eculizumab) in England;

  - aHUSUK a patient and family support group set up to bring together patients with aHUS and to do on a UK level what other countries have done for their patients.

  aHUS patients are a small group and even now 5 months on from the Newcastle conference aHUSUK is only aware of less than 10% of the aHUS patient cohort in the UK!

  A simple illustration of how remote aHUS patients are, is that tonight my daughter spoke to another patient who became ill with aHUS at the same time as her and has had an almost parallel treatment experience with her at the same hospital for the past 10years and they only found out about each other a week or so ago.

  As I say the hope is that aHUSUK will also remedy that.

  There is more news about what is happening in the UK but I will leave it at that for now!!
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    Lenwood published 6 months ago | Originally written in English

    Hi Cheryl

    Yes I appreciate that it may seem a bit hard hearted; but if we are going to confront people who need to demonstrate that they have made a rational decision; it would help them, certainly in the current economic climate, that it makes economic as well clinical sense to recommend our application..

    I would be grateful if you could lead on it within the USA community I can send you the list as it stands with your items added.

    I agree that some hardships can be found on the blogs. Jaen-Francois account on this site introduces "blue finger" and " loss of fingers and toes", which I was not aware of. Indeed aHUS ultimately caused his divorce.But it would be better if people make a contribution themselves.

    Tomorrow I am off to London for a meeting with the trustees of aHUSUK and aHUS Action.

    We are also going to Parliament to watch proceeedings, although the MP who we thought might be raising the issue of aHUS in the House of Commons may sadly not now be called on to speak this time!

    It will be Wednesday before I can send the revised list to you. Can I send it direct through the Foundation mail service?

    Len
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    cherylbiermann published 6 months ago | Originally written in English

    Hi Len,

    That is fine to send it via the other site, I will look for it. Hopefully the our Thanksgiving celebration Thursday will be an easy clean up, I have my twins home to help. I wouldn't expect to see anything before Friday. It shouldn't be too hard to come up with a title that will draw attention and a call to action, so I look forward to your list.
  • 
    Lenwood published 3 months ago | Originally written in English

    Events over took this but Alexion were able to produce a societal cost submission to AGNSS as part of their case ;although the details of it have not yet been made public.

    There was however a public statement at the meeting in Portcullis House in Westminster, to raise awareness of aHUS, that clinicians in the UK have demonstrated that eculizumab has cost advantages over other forms of treatment

    The campaign continues in the UK.

    aHUSUK are to make a submission to AGNSS and a Patient Voice Group will be active in supplying the evidence needed.

    I have no concept from reading information on this site on how other european countries are progressing on making eculizumab available to aHUS patients in their respective countries .

    I will set up a new forum about the issue.
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  Mireya | published 3 months ago | Originally written in English split in liver

  I need your help. There is a little girl using Eculizumag and her kidney is fine 100% doctors has decided to put in a piece of liver. Anybody has this option in ahus ??? i do not know articles about this
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  marisaboule15 | published 3 months ago | Originally written in French Soliris

  Bonjour a tous,et avec du retard,une heureuse année .Depuis 1 mois,nous avons dus arreter les injections de Soliris pour Constance,car elle devenait allergique,elle ne le supporte plus!!!! J'ai très peur qu'elle rechute !
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    LindaBurke published 3 months ago | Originally written in English

    I am sorry to hear of your daughter's difficulty, and no (to Mireya's question) - I have not heard of any other reports of allergic reaction in aHUS patients using Soliris (eculizumab). I support Nicolas' comment about notifying Constance's doctor, and hope that your physician is in contact with other medical personnel that may have experiences or information to illuminate this issue. As with any new innovation in rare disease products or drugs, it is important to connect communication among all parties to promote the discussion of solid medical information, with experienced physicians, and a shared knowledge base. With every best wish, Linda

    Je suis désolé d'entendre parler de la difficulté de votre fille, et non (à la question de Mireya) - Je n'ai pas entendu parler de tous les autres rapports de réaction allergique chez les patients utilisant CTA Soliris (eculizumab). Je soutiens commentaire de Nicolas sur la notification médecin de Constance, et nous espérons que votre médecin est en contact avec d'autres personnels médicaux qui peuvent avoir des expériences ou des informations pour éclairer cette question. Comme pour toute innovation dans les produits nouveaux de maladies rares ou de drogues, il est important de connecter la communication entre toutes les parties à promouvoir la discussion de l'information médicale solide, avec des médecins expérimentés, et une base de connaissances partagée. Avec tous les vœux, Linda
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    marisaboule15 published 3 months ago | Originally written in English

    Bonsoir,a tous,je viens de vous répondre,je n'y arrivait pas cela ne marchait pas ,mais c'est rétablis: merci de votre soutient,merci pour Constance.
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    cherylbiermann published 3 months ago | Originally written in English

    I am so sorry, I was without internet access a few days...this is the first I have heard about allergic reactions. My first thought is, let's not panic, there are other things that could be causing this and they have check the most obvious and ruled it out. My second thought is that if it is an allergic reaction could premedicating with an allery inhibitor, such as Benadryl be used? My son did have reactions occassionally to FFP so this helped. My third thought is that marisaboule should contact here case manager for Soliris at Alexion immediately and have her child's doctors research this question with them. I am waiting for the translation but I did use a bing translation which was not as clear as I would have liked. Please keep us up to date.
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  marisaboule15 | published 3 months ago | Originally written in French Soliris

  Good evening, this is my third attempt and I hope that this time will be the good one: when SOLIRIS was injected on January 3, as soon as the infusion began, Constance began coughing, had trouble swallowing, was extremely nauseous, usually that would happen at the "rincure", but not systematically, the doctor examined her, nothing! The infusion ended, she continued coughing, we returned home. At home she did not eat very well, she continued coughing and, most importantly she could not sleep: she began seeing things, she began hearing things, she was terrified!!! The following day, back at the hospital, the doctor examined her, nothing! X-ray of her chest, nothing! he prescribed SOLUPRED and aerosols. After five days Constance was smiling, eating well, and most importantly, sleeping! 15 days later, we returned to the hospital for her injection (of SOLIRIS), she was taken for her check up and the doctor told me that we would have to stop Constance's injections, after one year, they were no longer doing her any good and, especially, the complements were no longer dropping! We approved, we had no choice, if it was to see her like that, and especially it could get worse, it wasn't worth it! I took Constance home, her check up was positive, now we had to wait for the complement dosage. I am so worried that her SHU comes back!!! That would mean new plasmas, back to the infirmary, infections... Thank you for taking the time to read this, thank you. According to the doctors, this could be a side effect of SOLIRIS.

  Notice: This text content has been translated automatically by a third-party service.
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  cherylbiermann | published 5 months ago | Originally written in English Merry Christmas

  Many of our population often come down with something this time of year and are stressed about not being at home when there is such an effort on everyone's part to make memories and spend time with loved ones. So my proposal is everyone offer a little prayer and send your thoughts heavenward that we all stay well or get well in time to enjoy this wonderful season. If any of you find yourself in a bad health situation, please let us know and we will flood you with prayers and messages!

  God bless our aHUS family and let us all enjoy the season of love.