hello from Virginia

Hi everyone, I work for a patient support organization in USA and am 52 years old. Currently I am working on setting up a registry for liver cancer, plus some educational information initiatives for viral hepatitis and NAFLD. I hope I can be of some help to the community and will share whatever information I can. Best wishes to everyone whatever your fight - knowing all your options and sharing your experience is always for the better.

17 Replies

  • Pleased to hear about your initiative and your willingness to share. Why do we need to think of dealing with cancer as a "fight", however? I was diagnosed with liver cancer and had a transplant in 2011 but at no time was I involved in a fight. I...

  • May I ask which patient support group you are working for ? Also have you got some info I can look at investigate further. Thank you.

  • Hi, great to have you on board. Interesting to hear the American perspective. Really interested as to how healthcare works there as we have the public NHS, and the private system you have there is probably misunderstood by most of us.

  • This,I fear,is where we in the UK are being gently steered towards,big private insurance companies with intimate contacts to the party in power-consultants/advisors etc,'relieve the tax payers burden' etc,basically George Orwell speak.Exclusions/pre-existing conditions etc,etc.Truly 'A brave new World'......

  • Hi Cityman62 I am very interested to hear about changes to the structure and system of the NHS, it has its critics but overall it seems to be a more efficient and fair way of delivering care (via a single organization) than the fragmented insurance based system. Although tax rates are lower in US, employers have to find money to pay for health insurance as a benefit, or people buy their own and its not cheap. One way or the other, health has to be paid for, so why not choose the most efficient way possible to do it? The pre-existing conditions issue has been improved somewhat here as a result of Obamacare legislation making it a rule that insurance companies must accept pretty much everyone. But that can only work financially if everyone is insured. I hope that the NHS can retain its structure and keep everyone happy too. Can you tell me if people with Hep C are getting access to the new curative medications? Over here it's been hard for patients with Hep C to get the medication unless they have advanced to quite late stage fibrosis or cirrhosis, which is not ideal and seems to be very much financially motivated.

  • Hi,Rolf,it's a bit different now for us in Wales,we have (extremely)limited,self- government,which in the health field,means we don't shadow the health system in England anymore.For instance,no prescription charges in Wales anymore-£8.20? In England.The Welsh government ring-fenced £14 million for hep c treatment recently-harvoni+riba if needed-rolled out-in order-cirhossis,then fibrosis,then into the 'wild' drug-using community,a well thought out plan,not only to save lives,but the end game is to snuff out hep c totally. Initially we in Wales were deeply suspicious of yet another layer of civil servants/beaurocrats etc.However,now we seem to see tangible benefits-the transplant decision in Wales-I believe is massive,also the decision to outlaw smoking in vehicles with children present.So far,so good I think,best,Andy.

  • Hi Andy that is very interesting how Wales has been able to make such big and impactful policy decisions. The culture is so different here, I think that an opt-out system for organ donation would be seen as an encroachment on freedoms, a bit like a significant number of people see vaccination programs. But it completely makes sense from a big picture perspective. I think that countries who successfully take that approach can lead change in other countries by showing it works, so good luck and let's hope it is indeed catching on...someone has to be first and someone has to be last. I've been quite surprised how quickly things have changed over her for smoking though, and in quite a short space of time bars and restaurants are now smoke free although I am not aware of a specific rule on cars and children. I think when government looks at the cost of COPD from smoking or the cost of liver disease it indicates that you have to make policies that make a difference, or these diseases can bankrupt the system through expensive chronic illness. All that is good for the patient too.

  • I think NHS England views the Welsh innovations with interest and also some suspicion at times.There are downsides,In Wales waiting times for operations,Cancer treatments etc are worse than the U.K.average.Also one wonders whether the lack of a prescription fee deprives the service of much needed funding.Saying that the whole UK system is buckling at the knees-a+e waiting times can often exceed 4 hours.Locally,living in a rural location- though on the edge of a large university town with 6 large G.P. groups,it's almost impossible to get a routine appointment sooner than within 3 weeks.When you walk into the surgery which will say seat 60 patients-expecting to see clamouring hordes of would be patients,there will be,say,5 people waiting-its obviously a lack of Doctors issue.Its heartbreaking to see a system prized and valued by all crumbling around the edges.

  • Hi there. I was a Proud Oregonian for 16 years, now in NZ. I have both NAFLD & Hep C. You mentioned educational material. Do you have links?

    I contracted the Hep from the USA, almost 20 years ago. Recently diagnosed with NAFLD but working on lifestyle choices.

    Welcome, this site is amazing. From a patient perspective it helps talking to people who speak the same lingo. (ALT, AST, LFTs, AFP, GGT.. Viral load, logs, fibro scan ect.) It's a great place to come and discuss our conditions, symptoms, and experiences with services & the medical system.

  • Hi Estiebargle, you are a long way away in NZ! Thanks for your reply. I'm happy to have found this site too, and that it is Made in Britain! It's great to hear that you are finding it helpful and valuable and its great that people can easily share their experiences and insights.

    Our materials are in development at the moment but I can point you to some that we really like at Mayo Clinic:

    Hep C: mayoclinic.org/diseases-con...

    NAFLD: mayoclinic.org/diseases-con...

    I'll post on here when our projects in development are available. One of our current projects is create resources to help liver patients find ways to "Lighten Your Liver Load". This is because having more than one liver condition adds to the overall burden on the liver and affect the speed of progression. We hope that this will lead to ways of identifying at risk patients by asking them to calculate their liver load and encouraging people to get screened.

    Hope you have a great day :-)

  • Hi Rolf. Have you looked at the educational material available via the British Liver Trust website? Can you tell us how your material will differ, or add to that available from Mayo for the USA and BLT for the UK? Also can you explain in a bit more detail what your "registry" for liver cancer (presume you mean Primary not Secondary) will be. Thanks.

  • Hi Bolly, hope you are doing well today. I'lll take a look at the materials at the British Liver Trust and give some feedback later this week. Liver cancer is a big area of focus for us and so some of our materials will be focused on liver cancer and risks for liver cancer. Patients who have had liver disease and are now at an elevated risk of liver cancer are a particularly important group for us because we see liver cancer rates rising and we need to understand why. We also need to be able to give better and clearer information to these patients (e.g, viral hepatitis, fatty liver, alcohol) as to what their actual risk is. Hence the registry - we want to track patients and try to understand why some develop liver cancer and some don't . Even at the genetic level by taking tissue samples and tumor samples. So what we are planning is a registry AND biorepository, as the scientists call it - a very big freezer!

  • Hi again. Will your register be worldwide or just patients in the USA? Will it be patients with HCC or Fibrolamellar as well. Will it be patients with active cancer or patients who have survived treatment options?

  • Hi Bolly :-)

    Registry will be worldwide - UK center will be Imperial College, with other centers to be identified. HCC only (not secondary liver cancer). Registry will be for all HCC patients - high risk, diagnosed, and survivors. I need to check on Fibrolamellar HCC, I know that previously all hepato-billiary types have been tracked but will clarify with principal investigator.

  • I'm an HCC survivor, so count me in!

  • OK, I just checked with the people at Mayo. Fibrolamellar HCC is definitely included. We are working with Dr Sanford Simon in New York who identified the gene associated with FL-HCC, so its an important area of interest.

  • HI my comments are obviously being ignored as the rambling of the "loony left" . But remember this we spent the treasure of an Empire, and the blood and bones of two generations of our finest young men and women. A land fit for Heroes was the politicians promise, I find it morally repugnant and an insult to those who died and their Heirs and Successors that this promise is being quietly forgotten in pursuit of filthy lucre. I recommend any one who has a chance to visit the battle fields of northern Europe to visit the Menin Gate And the Ossary at Verdun, if you don't weep you're not a member of the human race. We must fight tooth and claw to preserve what is left of that noble legacy and ensure that OUR NHS continues to provide world beating care free at point of nee.

You may also like...