My friend, Andrea Sloan, is desperately seeking a compassionate use program for BMN 673 from BioMarin- if anyone has any suggestions, connections, or information that would be great. She is not eligible for a study. Watch this video and please sign this petition.
Thank you all so much
Hello smh,
I would love to help your friend and I understand her and your desperation, but this group is based in the UK and so there is a limited amount that we can do. Have your joined the Inspire/OCNA site, or contacted the OCNA, the American Cancer Society, etc.. They could be a lot more helpful to you than we are - because we're on the other side of the Atlantic, our signatures would be ignored. At the moment, as far as I know, BMN 673 is an issue only in the US, I don't think there are any trials going on in the UK at all.
Hope you get your friend on the trial. Best wishes, Cx
BMN 673 and denial of access is not just a U.S. issue - iIt is also a U.K. issue. BioMarin recently denied teen Chloe Drury, from Purley, in Surrey. Her Memorial Service was last Saturday. Does anyone know how to reach her Mom - Debbie Binner? Does anyone have contact with Maurice Saatchi, House of Commons, who had the first reading of the Medical Innovation Bill (this week)?
Hey everyone, the Change.org petition is for anyone and everyone to sign regardless of their country of domicile. Let's support Andrea Sloane's campaign. I signed the petition and it allows you to select friends in your Facebook circle to share the campaign with them too.
We're all in this together ladies. Please take a look at the video clip and consider signing the petition.
To SMH88 please wish Andrea luck with her campaign. There's power in the patient voice and the drug companies developing novel treatments for us need an international kick up the ass. If they're so interested in finding a cure they should be working together, and equally the agencies who approve drugs in each country could save time and cost in the battle to find a cure if they worked together too.
I hope you get a good response from the various communities across the globe. xxx
Signed. (anyone can support this it is not just limited to the US )
It seems a shame that those of us who are running out of options and are willing to potentially risk our lives taking a new compound that we are unable to do so. I realise that US drug companies are constrained by FDA regulations and the fear of litigation, but ultimately if we are prepared to take the risk and give them some potentially early information on the possible response to the drug there must be a way to do it even if it means signing all our rights away in some sort of waver.
Good luck
Dear Janice, Re your comment on avenues for women who are running out of opportunities, I was at a training event last Friday and the speaker was Dr Susanna Banerjee from the Royal Marsden. She mentioned that Phase I and II trials are available to women with advanced ovarian cancer who have platinum resistance so there are opportunities for us in the UK. Of course these are for very small groups but they are available nonetheless if you have access to a major cancer centre of excellence.
My interest in Andrea's case is firstly to hold out a hand across the Atlantic to a very brave woman who is in the same place as me and to a woman who is doing a great deal to raise awareness of Ovarian Cancer through her TV appearance and campaign. I'm also interested in her campaign because it highlights the waste and cost of current drug development and trials. I attended an APPG on ovarian cancer in May and the sales director of Roche, who produce Avastin, said the cost of drugs are so high partly because a drug company has to work with the NICE equivalent bodies in every single country where the drug is used.
There was a great deal of sympathy for Roche round the table and frustration at the waste and cost let alone the delays in introducing new drugs. My oncologist in Cardiff told me her opinions count for nothing politically but it is the patient voice that counts. Of course it goes without saying that the patient has to be well-informed before lobbying which I am sure is the case with Andrea. Her physician has told her it would be a great drug for her and she's willing to take the risk. I applaud her and I wish I could get to know her because her case highlights some of the barriers that need to be addressed globally if we're going to get better treatment for ovarian cancer.
xx Annie
Hi Annie
Good to hear your comments.
I also really hope that Andrea is able to access the drug that her oncologist obviously feels would be suitable for her.
Having worked in medical reseach I also have sympathy for these companies who have to go through endless constraints imposed, not only in the country of origin but internationally, for the drug to be licensed in a worldwide market this unfortunately is reflected not only in cost but also the timescale that it takes to bring a new drug to the market.
Good to see you on Sky news the other morning keep doing what you're doing it is making a difference
Hugs
Janice
Thanks Janice. I think the more glamorous interviewees were all away on holiday on the Friday it was filmed! lol
I hadn't realised you worked in medical research. You would have been very interested by the debate on Avastin and drug development that took place in Westminster. Now I've relocated to London I hope to attend more APPGs. I understand they're open to anyone who wishes to go along. It was Target who asked me to attend the one in May and to speak on Avastin but Louise Bayne is also an observer so I'm assuming Ovacome could also extend an invite to join? I think the next one is November so I'll ask what topics are being debated.
xx Annie
Dear All,
This posting has been brought to our attention via an abuse report.
We would ask you to exercise caution in this debate. Having read around the issue it is apparent from comments from the company that this drug has not progressed past the earliest trial phases and they are uncertain as to whether they will be continuing to investigate it in ovarian cancer. One might therefore conclude that the results are not as stellar as implied.
The issue as to whether a company is prepared to allow someone to have access to their unlicensed (therefore it has not had all of the data externally examined nor results peer reviewed) and not as yet fully tested drug is for them alone. We would advocate that unlicensed treatments which have not been examined in a phase 3 randomised controlled trial should only be administered in the context of a fully set up and ethics approved clinical trial.
L x
Thank you Louise for this information,
I did try and look this up earlier, but I wasn't very clear on what I was reading (must be the chemo Doh! ) so thank you again for clarifying this. Love x G x
( Ps I have just noticed that Sharonforce posted up about this about a month ago, and she was on this BMN673 trial at the Royal Marsden for about 10months apparently with some degree of success )
Thank you all for your responses- I actually had not realized this was a UK based group, but BioMarin's studies for this drug are only in the UK and US right now, and actually more so there I believe. They will be having a conference there later this month to present their findings.
That being said- I would love for you all to sign the petition- I think a global movement is great. If this isn't the right drug for her it just wasn't meant to be, if any of you have thoughts or suggestions for things that have worked for you I'd be interested in hearing.
Cancer sucks.
I'm sorry, Gwyn has corrected me. But I also agree with the point that Louise makes - the entire process of drug development and especially phase 1 trials is so complex that I don't think that we, as patients rather than experts, can or should try to influence the process until it is well established that the treatment is effective for ovarian cancer. I hope very much that your friend gets treatment that will be effective for her - you are a very good friend indeed for doing do much to help and support her. Cx
Thanks chrystynh, I do agree with the Phase 1 info, she has tried to get into trials, but they are full and won't make the exception to allow her into another- Given Sharonforce's results it doesn't seem like BMN 673 has found an even half way accurate method. But my friend has put hope into this and I think regardless of the outcome having this would put her at ease no matter if it prolonged life a year or 20.
Hi Kirsty, It does seem today that patients are encouraged to be proactive in regard to clinical trials. A couple of us on this site completed a training programme last week to become lay judges of funding applications for clinical trials. I've just had my first batch through to read and score. It's vital that patients have a say in what clinical trials are funded and how they are designed to ensure scarce resources are applied to projects that are relevant to the needs and interests of patients. We've been told our voice is important and our scores will be treated with equal respect as the scientific judges on the panel.
xxx Annie
Hi SMH88, This thread is really interesting and I'd love to hear the results of the trials given one of the group here appears to have been on the trial at the RM and it's being tested with you.
I don't know whether things are similar in the US to here but my experience in the UK is that drugs funding and treatment is a bit of a postcode lottery. I discovered that my area health authority in Cardiff, Wales does not fund Avastin whereas an adjacent health authority in Wales does. My former health authority would not fund second opinions or referrals to trials outside the authority - others in Wales do.
I came to the conclusion that I needed to relocate to a postcode where I had access to the full range of drugs and treatments and this is exactly what I have done. Already I have experienced a different approach and drugs I was formerly denied have now been offered to me. Is this an option in the US?
xxx love Annie
Dear All
Looking at the posting guidelines above and the wider guidelines in the help section of Health Unlocked I'm racking my brain to think why this post or the thread has elicited an abuse report.
I hope we are not giving anyone overseas the impression that they shouldn't be joining this forum or posting here. No one has incited irresponsible behaviour but we have merely been asked to support one woman's wish to join a phase III clinical trial which I understand is active in the US and in the Royal Marsden here in London. If this lady, who's clearly very intelligent and articulate, wishes to join a Stage III trial and her friend has asked us to watch a TV newsreel and consider signing an international petition then I don't see the problem. I've signed it but it doesn't mean I intend to do anything more. I shan't be laying siege on the RM to join their trial or to lobby for it to be extended to Ovarian Cancer. I sympathise with Andrea that it seems unreasonable to exclude ovarian cancer which is a result of the BRAC gene defect given the drugs company have not given her a reasonable explanation.
I wish Andrea all the luck in the world with this campaign and hope she gets more international support for her appeal.
Annie
Thanks Annie,
While I don't know either while this posted would be flagged, I now understand the precautions you guys have. I am just seeking opinions I suppose. You guys have been through so much as well as your families and I think it just helps to have a group to go to.
Thank you all for responding. Andrea is extremely intelligent and her doctors are the #1 facility in America for cancer. I hope that things line up into place and I am so happy you took the time to watch the newsreel. Thank you again.
Staci
Dear Staci It's good to know Andrea is in good hands. Her intelligence and dynamism came through in the TV interview and I hope it had widespread coverage to raise awareness of ovarian cancer. She looked very well on camera so while I was watching it I was hoping she still has a good range of treatments available to her.
Reasons for reporting something on this site are listed: Personal abuse, trolling, offensive or threatening language or spam. There is an 'other' box to select. I'd dearly love to have some feedback as to what caused the problem because I'd hate to upset any of my friends on this site. Perhaps someone didn't like my reference to kicking a donkey. lol That comes the nearest to the list of abuses one might report. What is strange is to have mentioned that it was reported in the first place and then not delete the post because I assume the administrator therefore didn't consider the report was justified.
Anyway it's good to know you and by extension your friend Andrea. She is a beautiful young woman and it's so hard for the younger women who get this disease. I was 58 years old when diagnosed. Perhaps it gives us a different perspective on having an incurable disease. I've also been incredibly lucky to have responded well to treatment so far - far better than expected. I'm looking at my 2nd line of treatment in the coming months and I hope to continue feeling well. Sadly many women with ovarian cancer don't have the time or wellbeing to fight their corner politically or otherwise.
Sending much love over the pond. xx Annie
Yes I remember Sharonforce doing a post on this and I think she mentioned where we could see some results from her trial.
If she is reading this post she may be able to enighten you on it.
Regards Barbara,
You can type in "Sharonforce" on the members thread and it was written up about a month ago love x G x
Please note that although we have received an abuse report, the thread has not been deleted.
We have no wish to stifle debate, and the issues surrounding this, whilst complex, are valid. We hope very much that this drug will progress to further trials (an indicator that it has shown some benefit) however the company is taking a cautious stance, and it is important that whilst we allow such posts to stand, they do not raise false hopes too.
L x
I believe a patient is allowed to comment on their own personal experience
I have watched the clip and will happily sign the petition and support in any way. Its people like Andrea who will make a difference for us all .
Also thank you Annie for your views and summarising of the situation .
Dy
I have signed the petition and would like to thank Andrea and all women prepared to participate in clinical trials from which I might one day benefit.
Best wishes
Ann
Hi, Sharon here. I have been away for a few days so didn't see this post until today. I have watched the video and signed the petition. I have also been contacted directly by email.
I have been in a similar situation to Andrea's - I had to push to get on the BMN 673 trial initially and waited three months for a slot. When it comes to your own health and particularly when you have exhausted conventional treatments, you have to be your own advocate. I agree with you Annie, and thank you for summarising the situation so articulately.
If you see my history you will see my personal experience of the trial BMN 673 drug. It was very effective for me intially. It reduced my cancer by about 90% but eventually the same tumours did grow back. I had no new tumours whilst on the drug. Although the drug stopped working for me I am still very glad I did the trial. I had a whole year with no chemotherapy and barely any side effects whilst on the drug.
I will add though the BMN673 drug didn't work for everybody on my trial. Some patients I know had no benefit at all but that could be true for many cancer treatments.
I replied to smh88's request on another thread healthunlocked.com/ovacome/... I am not sure if these internal links work in these posts now - it took me ages to find the thread via the website even though it was one I initiated. Searching for BMN 673 in the top right hand search box doesn't find it. I posted a link to the phase 1 trial results presentation on that thread.
Happy to answer any questions about my experience of the trial or drug.
Best wishes
Sharon
Hi Sharon- I'd love you to contact Andi if you haven't already- we were made aware of the young girl in the UK who also passed away recently who was denied access to BMN 673, it would be great to unite all of you- one who has used the drug, one who's family has struggled and watched the crisis, and then another who is going through it currently.
Just a thought- Andrea Sloan on facebook and change.org/andisarmy are both way to contact her.
I wanted to thank all of you- sorry I thought my post had been removed but it was a computer error on my end.
Andrea has started a movement in the U.S.A.- google her name Andrea Sloan and BioMarin and you will find news story on major national channels. She has gotten the support from celebrities and even people at the white house- now we just have to keep fighting and see how BioMarin reacts- I'd love for you to keep posted if you choose-
Thank you so much
Having a wobble
Riddled with anxiety
