Xiapex to be discontinued

Well the news is official. Endo has already discontinued Xiapex in Australia and Asia, and plans to do the same to Europe by the end of 2019. The reason? They won't say. We suspect the higher prices in the US and the pending license for cellulite play a role. Even if they proclaim to be an ethical company, they want more return for their shareholders and bonusses for their CEO's. At the cost of depriving patients, and denying them a treatment that may help keep their hands mobile, straighten their penis, keep their life normal.
This is the letter Endo and Sobi published, but keep in mind Sobi wanted to keep supplying and Endo made the decision one sided.

Healthcare Professional Information regarding de-registration of XIAPEX® 

Dear Healthcare Professional

This letter is to inform you that Sobi will discontinue the commercialisation of XIAPEX by the end of 2019.

XIAPEX is a product owned by Endo Ventures Limited (‘Endo’). Currently, XIAPEX is commercialised in the EU and other European and Middle Eastern countries by Sobi. Endo and Sobi have agreed to terminate the cooperation agreement for Xiapex effective December 31, 2019. The decision to withdraw is not based on safety or efficacy concerns.

Endo and Sobi are committed to managing the de-registration of Xiapex from the Sobi territories in an ethical and transparent manner and Sobi will process the withdrawal of the EU Marketing Authorisation, which will be effective from 1 March, 2020.

Please be assured that the wellbeing of patients during the discontinuation process is of paramount importance to Sobi and we are committed to the safety and comfort of all patients during the process of transition to other therapies. We want to emphasize that, subject to product availability from our supplier, Sobi is committed to providing XIAPEX up until the end of 2019.

We would like to thank you for your interest in XIAPEX over the years and deeply regret any inconvenience this may cause you.

If you have any questions or concerns, please do not hesitate to contact us at your convenience. 

After de-registration, all enquiries, questions or requests for Named Patient Use of Xiapex must be referred directly to Endo. Contact www.endo.com/contact

Yours Sincerely,

Carolyne Dyson
Business Unit Director

Sobi

 

And this is the letter I send to Endo:

It has come to my attention that Endo Pharmaceuticals is planning to withdraw Collagenase Clostridium Histolyticum (CCH) injection from the whole of the European market. I sincerely hope I have been misinformed, but would like to express our Societies view on this to make you aware of how we feel about this possible development.

CCH is an important addition to the limited treatment options for Dupuytren's Contracture. The only alternative treatment would be a type of surgical procedure, and not every patient, not every hand or finger is suitable for that. For some patients CCH is their main or indeed only hope of regaining and keeping hand function. Similarly for Peyronie's patients CCH is an important additional treatment option, one that allows non surgical treatment and regaining normal function and appearance of their penis.

We as a charity have spent a lot of time and effort fighting to get CCH accepted by NICE as a treatment for Dupuytren's Contracture, so it is now used by the NHS under the right circumstances. It has been an enormous joint effort of Sobi UK, Auxilium, The British Dupuytren's Society for the patients, the British Society for Surgery of the Hand and the British Association of Hand Therapists for the health care providers to reach an acceptance by NICE.

By withdrawing CCH from the UK (and indeed EU) market you are making a mockery of all the arguments we used to explain why the drug is needed and is a revolutionary treatment for patients.

There are several trials ongoing or about to start, at least two in the UK, to evaluate the effects directly and long term of CCH compared to some of the surgical options available. These trials have a lot of money and manpower put into them already, and if they can not proceed that will be wasted, careers of the researchers may be damaged and awarding bodies may be reluctant to back similar trials in the future. Important questions will not be answered about the effects of CCH compared to more traditional surgical treatments.

Withdrawing CCH would leave patients in limbo; there will be Peyronie's patients who are somewhere in the cycle of injections where the treatment can't be finished, and both Dupuytren and Peyronie's patients who have agreed with their physicians that CCH is the best option for them, who will be denied that treatment.

Withdrawing CCH for what may well be profit reasons is reinforcing "Big Pharma's" bad name. Endo Pharmaceuticals has a code of conduct for their employees, that states "Endo is committed to conducting business in an ethical and compliant manner". How can it be ethical to withhold treatment from a large population group, and the group that statistically tends to be the worst affected with the disease the treatment was developed for? You would be turning your back on exactly those patients your treatment is supposed to help.

Endo is supposed to have a commitment to patients and communities, to "provide better access to care for patients". This decision would achieve the opposite of what you aim to achieve according to your Code of Conduct.

Your president Mr Patrick Berry said in his speech in 2017 : "Endo is committed to delivering quality medicines to patients in need". If Endo is withdrawing CCH from the European market in order to have more of the drugs accessible for cellulite treatment (at a higher price), you would be doing the exact opposite of what your president wants. Cellulite is not a disabling condition and does not impact on basic daily activities, whereas Dupuytren's and Peyronie's are disfiguring and impede normal functioning of the affected body part, leaving the patient disabled. Surely patients needs should come before profits in a health care company that professes to have an ethical stance.

Yours

A S Schurer, for the British Dupuytren's Society

What more can we do? I emailed Endo (ok, to all 10 different email addresses I found online), emailed all news papers that published articles on Xiapex in the last few years that I could find.
I think patients should let Endo know what they think. Email them!! The more comments they get the better. We need to show them that Dupuytren's and Peyronie's patients stand united in the fight for better treatments and eventually hopefully a cure.
 

 

 

Charity Commission, Sabazios and summer?

Long time since the last blog! I have not done much, thanks to Frozen Shoulder nr 4 rearing it's ugly head. The NHS is not much help (well what did I expect?), so now I will take one day at the time.

 

We applied for charity registration with the Charity Commission, have not heard back yet. We applied for a grant to help make the charity better known (Thank you Mr Henk Giele for writing the application).

 

The website keeps changing little bits, additions here and there (such as a bit about the Sabazios cult in ancient Rome) But big rewrites may have to wait till my shoulder tolerates a few days laptop work again!

 

A study on using Xiapex for nodules seems promising, in the right dose the nodules softened up.

And don't forget the RIDD trial, still looking for participants. https://ridd.octru.ox.ac.uk/

 

 Gary and his wife Katie are still doing runs to raise money, though some health problems have forced them to slow down a bit. Health is more important than anything!

 

More soon I hope, for now I wish everyone good health and a return of summer!

Good News at last!!!

Well friends members and anyone interested, do we have news!!
After four years of meetings, discussions, appeals, negotiations, and not giving up, we finally have good news.
NICE has published their decision on collagenase use in the NHS, and we are happy with it! No more appeals.
It is allowed with some provisions, only if PNF is not suitable, if it does not interfere with a trial ongoing by Mr J Dias, and if surgeon and patient agree on the use.
Of course where you live can still be a problem, different CCG's have different rules on how or when to treat Dupuytren's, but at least it is not a rejection, and surgeons now using it can continue using it.
We owe a great debt to all those who fought for our community, the hand surgeons and therapists involved, everyone at Sobi and the solicitors who helped us (pro bono) with the appeal.
Rejoice!!

News for Peyronie's patients

Earlier this month the American Urology Association had a large conference meeting with specialists from all over the world presenting their latest thoughts and trial results. One of the (many) subjects covered was Peyronie's.
Two interesting and encouraging developments:
One: it would seem that using collagenase (Xiapex) is safe in an earlier stage than so far indicated, so maybe patients can get relief earlier and may not have to wait till the condition is stable for two years. This would be off licence treatment, not supported by the manufacturer at this stage. But is it hopeful!
This was presented by Dr James E Anaissie from Tulane, New Orleans.

The next very interesting poster was by our trustee Mr David Ralph from London, who has trialled a shortened course of Xiapex injections for Peyronie's, which will give faster relieve and be less costly. The results were excellent, again this would be off licence, not what the manufacturer recommends, but it does seem effective and offers faster results!

 



I am very happy to see progress is being made in how best to treat Peyronie's patients. Thank you to the doctors devoting their time to this!

News and another interesting article

Another good article has been published online, about the results of surgery for Dupuytren's. http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD010143.pub2/epdf   The main writer is Mr J N Rodrigues, it is part of his thesis study.

On Wednesday 7th Dec we are hoping to have the next trustee meeting, it will be partly face to face and those who can't come will try to connect via Skype. Our Secretariat Gemma has arranged it all, and it must have been a lot of work! Mr David Ralph has kindly offered the use of his office for it. It will be good to meet some people face to face!

We had the next meeting with NICE about the use of Xiapex, now we are waiting for their next decision. I have told them that in the charities opinion Xiapex is the last hope for some patients, and therefore we do not want a blanket ban, we will be happy with limited guidance. But we just have to wait and see now. The manufacturers were well represented, and NICE had one hand surgeon (one of our trustees, but I am not sure if he represented us or the BSSH) on a conference call. Thank you Mr Henk Giele for taking the time to join the post-appeal meeting!

The decision on radiotherapy is due soon, we will keep you updated for that. For now, have a good day, wrap up warm if you go outside!

A new study on treatment results has been done

Things are happening in the world of Dupuytren's.
On 24th Nov we are attending the next NICE meeting, like a never ending story through the years! This one is post-appeal, to hear wat the Decision Support Unit has come up with, and yet again plead the patients case that surgery is not the be all and end all for every single patient, though it helps a lot of us (me included).

I have been in communication with Mr Jeremy Rodrigues, a doctor who has done an extensive study  assessing the results of Dupuytren's treatment, what influences it and how can we best  measure it. He has written a thesis on this, sadly it is not in the public domain yet. However the summary of his findings are on our research page! http://dupuytrens-society.org.uk/ongoing-research/

In Belgium Dr Ilse DeGreef, maybe THE foremost Dupuytren surgeon of their country, has started a Dupuytren Fund to raise money for more research, she would like to banish this condition for good. So would we! More information will follow on our research page in the next few weeks I hope.

I will keep you updated on the NICE proceedings, there is movement in the Radiotherapy appraisal as well. Have a good day for now!

Waiting for NICE and stem cell research in New Zealand

Well the weather has definitely turned cold and miserable, the sky in Wigan is grey, the air wet and cold. So pamper your hands feet and shoulders, they don't like this weather!

 

At the end of the November NICE will hold the next appraisal meeting on Xiapex (almost a year after the appeal, 6 days short!). I have applied for a place to observe, now waiting for approval to attend. You would think if they send you an invitation, you are already approved?

 

No news on the radiotherapy front, don't expect anything there till December at least.

 

In Wellington New Zealand the stem cell research is continuing, and the researchers have answered my email and may write a paragraph for our research page. Can't wait! http://gmri.org.nz/cms/the-gmri-lays-foundation-blocks-for-budding-researchers/

 

We have a link to our website on MyTherapyApp, a useful app that reminds people to take tablets, do their physiotherapy exercises and keep themselves as healthy as possible. http://gmri.org.nz/cms/the-gmri-lays-foundation-blocks-for-budding-researchers/

 

A lot of  hand surgeons have travelled to Buenos Aires for a conference, they are enjoying good lectures and round table discussions, good weather and more important the chance to get to know each other and discuss cases and treatments in an informal setting. These conferences are what makes international cooperation possible. I wish them all a good and informative time!

 

Gary just walked to the top of Mount Snowden, how is that for a post-radiotherapy for Ledderhose achievement! Well done Gary, we are all proud of you!

Last Thursday was the NICE meeting on radiotherapy. Ian Ireland very kindly volunteered to go as I could not, and Gemma Matthews went as well.

The meeting could only be observed, but they did mention the statement I had made on behalf of the BDS, statements from other patients and did they really have to assess safety as radiotherapy has been evaluated for so many other conditions already.

The committee members did not seem to have any special knowledge of Dupuytren's, we came across that at the Xiapex appraisal as well but there we had the chance to spend a few hours informing them of what the condition does and means for patients. That was a different group of people, and apparently they had not communicated. I discussed the condition with someone before the questionnaire was made, but that person was not in this committee either. Shame a decision is taken about a treatment for a condition that those who take the decision don't really know much about.

So now we have to wait for the decision.

 

On another note NICE has decided to hold the next Xiapex meeting, a week short of a year after the appeal meeting! Can't accuse them of rushing things.

 

I am still trying to get more scientists on our research page, found a mention of stem cell research in Wellington New Zealand which the researchers think might help us! I hope they are next on my research page. If they reply to my email.

 

Seeing many patients would like to discuss radiotherapy but most doctors tend to dismiss it, I have started making a list of doctors willing to discuss it as potential treatment and even refer for it. If anyone knows of such a doctor please let me know! anna@dupuytrens-society.org.uk

July 2016

We had a trustee meeting last week, everyone agreed the Peyronie's campaign had been a success and the message went further than we had expected. Now to decide whether to do the same thing for Dupuytren's and Ledderhose. Dupuytren's has had quite a bit of attention in the media with first Pfizer, then Sobi doing awareness campaigns. Ledderhose is the forgotten condition that gets hidden away in shoes and nobody notices it.

 

The BSSH together with the JLA (James Lind Alliance) have a survey they would like patients in Britain with hand or wrist conditions to take (or those that care for a patient with hand or wrist problems) Check this page for more information and links to the survey. http://www.bssh.ac.uk/patients/bssh_james_lind_alliance_partnership.aspx  

 

We have started writing to researchers hoping to put together a webpage on research being done at the moment. Ideally every team would write a few lines for us explaining their research and what they are hoping to achieve. After 2 days I had 3 replies already, so far so good. Only 15 more replies to come I hope!

 

We are still waiting for NICE to make their final decision on Xiapex after it went back to the appraisal committee, and for a different group from NICE to make a decision about radiotherapy. Let's hope both decisions are patient friendly and allow access to the treatments the patients want!

Keep well and look after yourself folks!

Nice appeal decision!!

We have a decision! It has taken almost 7 months, but NICE have decided that the appeal should be upheald. Not for the whole of the Dupuytren's community, they still prefer patients to have PNF but for those who are not suitable we can argue the case again. https://www.nice.org.uk/guidance/GID-TAG364/documents/appeal-decision So back to appraisal it is.
Anyone who wants to know what the decision was based on, this document gives the arguments and reasoning. And for someone interested in the whole process: the documents can be found here: https://www.nice.org.uk/guidance/indevelopment/gid-tag364/documents

On another note the Pulvertaft Hand Centre in Derby would like to know what patients feel about splinting, especially after PNF. https://www.surveymonkey.co.uk/r/splintingfordupuytrens  It is a short survey, so won't take much of your time! Go ahead and do it.

The Peyronie's campaign has reached a lot of people and countries, and we are now considering how to build on that. Our Thunderclap reached the 100 supporters-limit, thank you to everyone who supported! We will keep you informed of any other projects we start, for now it is back to appraisal on Xiapex and hoping NICE makes the right decision on Radiotherapy. Exciting times for Dupuytren's patients.

Radiotherapy for Dupuytren's experience wanted, and video interviews for general awareness

Even though NICE has not decided on Xiapex use yet, they have now decided to review the guidance for radiotherapy in early Dupuytren's. So far it was limited guidance with any NHS treatment needing to be done in a centre where the results were special arrangements for clinical government, consent, and audit or research are in place. This has limited the number of centra willing to perform the treatment.

NICE now decided on a consultation where they want patient to fill in a questionaire, to help them decide if the procedure is safe and effective enough and if special consent is needed.

So we are looking for any patients who have had radiotherapy treatment and are willing to help, to start by filling in a questionaire, maybe at some stage one or two will be asked to come to London or Manchester for the appraisal if NICE wants to ask more questions (that is what happened with the Xiapex appraisal, but you can just say no if you can't come).

So please, anyone who had radiotherapy and wants to help try and make it available for more patients, contact me on anna@dupuytrens-society.org.uk , or via our Facebook page or group.

We are also still looking for people to do a video interview with SayCommunications on how Dupuytren's has affected their life, everyday tasks, work and / or hobbies, for an awareness campaign.

This will be to explain to doctors and the rest of the community that even if Dupuytren's is not dangerous it does need  treatment before a patients hands get really bad.

And of course we are still working on a campaign for Peyronie's, Dupuytren's little brother disease that nobody likes to talk about. But we will change that!

So if you want to help us with any of these causes, use my email, go via the website on the contact us page, go to our Facebook page.. get in touch!!

NICE or not?

Well as of four days ago NICE does not recommend Xiapex unless in trial settings, patients who've already started on it can continue the treatment but others are condemned to having surgery as far as the nice people at NICE are concerned.

https://www.nice.org.uk/news/press-and-media/nice-proposes-further-research-for-dupuytren%E2%80%99s-contracture-treatment 

We can appeal, but seeing they did not listen to the patients point of view the first time, will they listen a second time? I don't know.

It is something to take into consideration, and all trustees must decide what they want, then we can come to a united decision. I hope to hear from them soon. Anna

Letter to my MP

 Two month almost since my last blog! In that time NICE has considered all comments we send them (and the BSSH send, and other people as well I hope) and they will make their decision on 9th February. We have approached two MP's, the first one asked a written question and the ministers reply had nothing to do with the question asked, so then I approached my MP about the fact that patients would like a choice of surgery or no surgery, and in Wales and Scotland the collagenase injections have been approved. Yvonne Fovargue MP has passed our concerns on to the Secretary of State for Health and the Shadow Health Team, so we'll see what that achieves.

 

Gary has been on local television and in his local papers promoting awareness of Ledderhose and Dupuytren's and radiotherapy for these conditions.

 

Xiapex has been given European approval for use in Peyronie's, seeing that multiple injections are needed I can't see it being available on the NHS any time soon..

 

The IDS has had their AGM, that means it will be time for ours soon. As the last one was a complete wash-out, I am not looking forward to this years meeting. But I suppose we have to do it. Sometime soon. So please see this as advance warning, anyone who would like to join in (I may try Skype this year, or Google Hangout again) please let me know.

Nice comments send

 Well the NICE comments have been send on, the last date to do this was 28th November. I have send them one page with my comments on the process, and two pages with patient comments. Will it make a difference? Probably not, but if we don't try we'll never know. I fear patient preference, easier recovery and less scarring is not as important as saving money at the moment.

 We have had help from Linda ( thanks Linda, you're brill!) to get questions asked in parliament, and I have emailed lots of papers and even Embarrassing Bodies to see if they want to do a follow up. A few declined, most did not even answer. But Gary has done one interview (they cut out what he said about NICE and Xiapex but it's good for Ledderhose awareness) and we may have another local newspaper near Gary interested.

https://www.facebook.com/video.php?v=10152868506228648

 On a more positive note there is a clinical trial starting in London treating Peyronie's patients with Xiapex, https://clinicaltrials.gov/ct2/show/NCT02267460  so anyone suffering from nodules and curvature in the penis check out if you could be eligible to join!

 When all this is over gary and I will have to start talking about a science page for the website again, to explain about MMP's and Transforming growthfactors and insulin like growthfactors hat are influencing our hands/ feet/ other bodyparts. My problem is that we did not have those when I went to university, and I still can't get my head around what each little product does. But I'm sure one day it will all click in place. (fingers crossed, lol)

 For now I will search a bit more for news on Dupuytren's or Ledderhose, then do some cleaning and after that go out for lunch with friends- my attempt at having a social life! Have a good day everyone.

 

 

Not so 'NICE'

 Nice has published their preliminary decision, NOT to allow collagenase (Xiapex) injections on the NHS, because their calculations said it is more expensive than surgery and the results may not last as long. https://www.nice.org.uk/guidance/indevelopment/gid-tag364

 The fact that the recovery is quicker, there is less chance of infection and less pain afterwards, it can be done without general anaesthetic (GA) whereas a lot of surgeons give a GA for surgery, it does not cause as much scarring so can be repeated easier than surgery.. All that did not make any difference, it is definitely more costly than needle release and marginally more so than fasciectomy (open surgery), especially if you assume all surgey is done under local anaesthetic as day case and because on average 1.1 vials of collagenase are needed you don't say that is eleven vials per 10 patients but you call it two per patient. We don't have much time to react to this statement (untill 28th November) , so please read through it and email or message us on Facebook wtih your comments. We need patients who are willing to be interviewed to explain to the media why they might prefert operations to surgery (not difficult to fathom!) so if you feel you can help: anna@dupuytrens-society.org.uk.

 Pretty please with sugar on people!

 I will be putting together a comment for NICE, and a press release that we will try to get on some news sites (how?)

 The fight continues, I know patients want a choice, not just to be told 'you need surgery!'

Initial Data from Survey

So today I had a chance to look through the 1st 90 sets of survey results, hopefully there will be many more. So the first graph below shows just that the average age of diagnosis for the survey group is mid forties and the max is 68 and the low was 12. I think that this combined the results for the second graph suggest either that we are generally diagnosed by the time we are 60 or that people over 60 are less likely to take an internet poll. Graph 2 shows an increasing number of people being diagnosed with age until they are over 59 when the number drops significantly.

The above graph, graph number 3, shows that nearly 40% of people taking the poll had the condition in more two limbs, about 30% in 1 limb and about 10% each in 3 or 4. This really just shows you have about 7 in 10 chance of getting them in 2 or more limbs. Interesting that it seems to be present more often in 2 limbs than 1.

The below graph show that percentage of people taking the survey who may be at risk due to each risk factor (blue). Note that for the family history result I look only at people who knew yes or no, interestingly this showed that over 60% of people had a family history of the condition. In red, as the UK had the highest number of participants, I tried to fine the rough UK average for each risk factor, this showed that there was almost double the number of smokers in the patient group compared to the UK public, but of course we do not know whether they were smoking before getting the condition or not. DD/LD patients seem to drink less than the national average and for the other there are probably too smaller number of people to say anything apart from there were more diabetes patients than I would expect from a random sample of 90 people.

 I then split the people with / without and unsure of family history into separate groups and looked to see if there was a difference in the average number of limbs in which the patient suffered. The numbers are too small to say if there is a difference and the unreliability of knowing the medical history of your family but the total average for all patients was helpfully exactly 2. For patients with a family history it was 2.2 and without and unknown were both 1.8. If we take the results for with and without family history at face value it suggests that those with a family history are at a slight increased risk of getting it in more places.

 There was no significant difference in the ages with which those with and without a family history get the condition, with there only being a few years difference in the averages.

 The next 2 graphs look at the same as the above but for smokers and non-smokers and basically smoking appears to make no difference to number of limbs or age of onset.

 Note that I know I have spelt NA (when spelt out in full) wrong but I didn't have the chance to fix it before doing everything and I am really busy this weekend.

Dupuytren's Treatments:

Interesting I next looked at the treatments the patients received. The highest amount of patients had surgery, interestingly it came back in 17 patients and didn't in 8 and of those that had it only 6 would recommend it and even those I was only asking what patients would recommend 9 people actually said don't get surgery. Typically it came back in about 4 years.

NA was not popular in terms of numbers, neither was physio but both had 100% success in the 3 patients that had those treatments, interesting and I would like to know how severe the physio cases were. Steroid injections had been used in 2 people, in neither did it come back but neither would recommend.

Xiapex stood out, although only 3 patients had it, in all it came back and inn an average time of only 1 year, 1 person still recommended and one said avoid the other said nothing.

Radiotherapy performed fairly well.with 5 patients have no disease come back and 2 having it come back in an average of 4 years but of the 7 patients 5 would recommend it.

 For ledderhose treatments there were not so many treatment options employed.

7 patients had surgery, in 5 it came back in an average time of 2.5 years, 1 person would recommend it whilst 5 said to avoid.

1 person had a steroid injection and it did not come back.

7 patients had radiotherapy for Ledderhose, in no patients has it yet to come back and all patients would recommend. Make what you want of that.

I still want to check whether the risk factors increase the chances of the diseases coming back, do if you have a strong family history have the treatments been less successful, etc etc.

Nothing conclusive and more data would be great and some potential trends still to look at, great to have some data though, particularly the information on the treatment options.

Another big step forward for the website http://www.dupuytrens-society.org/index.html .

We finally have the new layout up and running, now we just need to find all the faulty links etcetera in this one, and that means going through the whole site, checking everything.. Gary has promised to make a start, and I am grateful to him.

Apart from that we have been working on sharing documents and annotations, Mendeley is a very useful program but it would seem both my and Judith's virus scanners/ firewalls have problems allowing it access all the time. So more wrinkles to iron out there. But I'm sure now my laptop is working almost normal again ( that's why I have not written a blog for a while, it suddenly kept freezing up halfway start-up, turned out the last virus scanner update had corrupted something, so it needed registry repairs and a new virus program- no more free ones for me for a while!)  we will be able to get on with our list of urgent things to do, and maybe even the less urgent or longterm plans.

Auxilium have as from May taken overmarketing Xiapex, they are the manufacturers but so far Pfizer has marketed it in Europe. So that's a big change, we said our goodbey's to our contact at Pfizer and Judith and I have already met our new contact at Auxilium when we were at the NICE meeting. We'll wait and see how good the contact will be and what they can do for Dupuytren's patients, but they seemed knowledgeable about the condition and related problems like Ledderhose, frozen shoulders, dorsal nodules, Peyronie's etc. And even about cellulite, as there is a trial using Xiapex for that. Maybe once plastic surgeons start using it the cost will come down? Wishful thinking.

Time to go and enjoy some sunshine, it is a bank-holiday weekend and my garden is crying out for some attention.

Anna

Nice Scoping meeting

Well, the Nice scoping meeting is behind us.

The main discussion points were:
- what treatment can Xiapex realistically be compared with? We decided only fascietomy ( surgery) as that is the only treatment routinely offered in England
- Which people can get Dupuytren's and is there a group in those patients that should be treated different? We decided anyone can get it though some groups are more likely to than others ( eg northern European, Serb and Croats, people from Haiti - I did not know that one!) but every case should be judged on it's own accord by patient and doctor, you can't say this group needs surgery more often and that group is better with injections)

I had the feeling a lot of it was educating the people from Nice, they were baffled by the answers now and then ( And how soon does it recur? Well that varies per patient.  How many operations are needed? Varies per patient. So if it starts young it as always more aggressive? No, just in most patients, there are lucky ones.) And they were shocked when I mentioned that amputation is generally seen as the final option for cases that don't respond to surgery, they had not come across that one in their research). 

Now Nice has to make a summary report, which will go back to the Department of  Health.

One of the BSSH surgeons asked for guidelines as he thought that could really help patients ( when should Xiapex be considered ratherthan only surgery) but Nice said this was just an appraisal meeting, so only to see if theycan decide on funding or not funding, not to form guidelines. Maybe in years to come?

On a more positive note I have heard that radiotherapy is available on the NHS in Exeter, done by a Mr Goodman.

Anna

NICE scoping

So last week we got an email from NICE ( National Institue of Clinical Excellence) to ask us to participate in a scoping for Xiapex. We knew it was coming, but not when.
Scoping, for those of us not well up on these term, means NICE is considering wether to consider Xiapex for funding through the NHS in England ( the second considering  is called appraisal, do we allow it or not). As a ( self proclaimed) patient organisation the invited us to take part.
So I had to contact works manager (in my week off) and ask for Monday 25th March the afternoon off, as it is in Manchester so I could get there ( live in Wigan, work in Haydock). Once that was approved I started going through the documents they send, 8 docs so far, they want our comments on the proposed scoping, did they get the condition right, the patient group, the reason why some people want treatment, why would you not want surgery with a 3 months recovery period, do we discriminate against any groups in the population if we allow Xiapex only for people with a palpable cord, why would we think Xiapex has anything positive to offer,  that kind of questions.
So my 1st week off  goes to the BDS, apart from yesterday's spa day ( was lovely, but why do they think you want a spa day so just a salad for lunch is ok? My stomach was waiting for chips!)
Maybe my second week off will include some more me-time? We'll see.

A quiet week.

Gary on holiday, Judith not well.. a quiet week, not much being done where the BDS is concerned.

I checked some emails, kept an eye on our facebook page- did you notice Mr. Chris Bainbridge posted that he has had good results treating advanced cases of Dupuytren's with Xiapex? That is very encouraging news.

I have been looking at our shop on http://www.cafepress.co.uk/britishdupsoc . Would it look very strange if I gave friends and family a bumpersticker for Christmas? And do I care if it seems a strange present? Spreading awareness of Dupuytren's and Ledderhose is worth something too!

After 9 months painful physiotherapy even my physio does not understand why my ( still frozen) shoulder still won't move normally. I am almost ready to give up and just accept a limited range of movements. Painfree movements would be nice though. Maybe try a few more sessions, and keep exercising, swinging weights around to stretch the capsule and ligaments.

I hope to do a hangout with Judith on Sunday, and may have another report then.