Congress: an interview

An interview with Gavin Finkelstein

Suzanne O'Callaghan is HFA Policy Research and Education Manager

Gavin Finkelstein, HFA President, spoke with Suzanne O'Callaghan about his experiences at the WFH Global National Member Organisation (GNMO) training and the World Congress

Suzanne: What was your overall impression of GNMO training?

Gavin: As always, it was great to meet the other GNMO delegates – to spend time with them, to see what is happening in everyone’s countries, to swap ideas. A lot of sharing also happens outside the sessions when you are chatting afterwards; for example, we spent some time after a session on volunteering discussing how you get people involved in your organisation.

The GNMO training was handled a little differently this Congress. It was at the Gaylord Palms Resort and Convention Center, which is where the National Hemophilia Foundation (NHF) Annual Meeting was being held. GNMO members shared some of the scheduled NHF sessions and were invited to visit the events like the NHF Meeting opening ceremony and the trade exhibition.

The NHF Meeting was larger than the conferences we are used to in Australia, with about two thousand delegates. And the trade exhibition really highlighted how differently the health system works in the USA. Insurance companies play a large role in treatment decisions as they pay for the treatments, and pharmaceutical companies market their products directly to the patient and their family. Being used to the system in Australia where the discussion about which treatment product is best for you is between you and your doctor and pharmaceutical companies are not permitted to promote prescription medicines to the general public, that is, to patients, it was quite confronting for me to see the type of promotional merchandise used to market treatments to patients – to children and their parents. We don’t see promotional merchandise branded for prescription medicines in Australia and there was not as much of a focus on the medical benefits of the treatments as I am used to.

Suzanne: What sessions stood out for you?

Gavin: There was a plenary on haemophilia treatment by Glenn Pierce, a man born with haemophilia who is a US doctor on the WFH Executive Board, and has worked for many years in haemophilia biotechnology research and development. He started at the beginning of haemophilia treatment and covered the last 70 years of development, right up to where we are currently and what the future holds. It was really well done: he was very clear and explained things like what factor deficiencies are with diagrams, and included information that was relevant to everyone, which was great for such a diverse audience.

There were also other good sessions. There was a session on outreach and engaging with rural and remote communities and the role of foundations in supporting the Haemophilia Centre work to identify where patients are located and individualising their management plan to suit their location. This is important to help to prevent health problems for them in the future. There was another good session on strategic planning, and I am following up on the information from that as it’s a difficult area for everyone. Some of the American chapters do very good work in social media, so there is also information to learn from there.

Suzanne: What was the most memorable aspect of the World Congress?

Gavin: I found it to be a very interesting Congress. It seemed to me that there were a lot more sessions on different classes of treatment products and that the emerging products presented are more diverse and innovative. These ranged from the extended half-life products to the other new treatments that are injected sub-cutaneously rather than into a vein. Gene therapy was another interesting area. It has been a long road, with some encouraging results now – but the question of when it is likely to be available still remains, with a common view being that it is still about 10 or more years away. There are also a few new bypassing agents for inhibitors that can also be used by people without inhibitors and may become more generally available.

Suzanne: You attended the session on hepatitis C treatment. What were the take home messages?

Gavin: The presentations on hepatitis C were fascinating. As in Australia, they were talking about eliminating hepatitis C completely: with a very simple treatment that has few and minor side-effects and success rates of more than 90%, there is a real opportunity now for everyone to have treatment and potentially be cured. Once the bulk of people have been treated, the issue in the future will be about prevention because the treatment is working really well.

At Congress there were very few people who had completed treatment and not been cured, which is fantastic for the bleeding disorders community. Hep C treatment is having a significant impact in Australia – but also developing countries are having great results, because the multi-level pricing structure has meant that it is affordable there. Over the last 12 months the availability of these new treatments has exploded worldwide, and this has meant we are getting a much better sense of the typical experience: people have been waiting for these treatments to become available and have now started to access the treatment, and they tolerate it well, they continue working and live their life as they normally would.

A few new hep C treatment products were also discussed – for example, velpatasvir, which has high cure rates for all of the different genotypes. This includes improved cure rates in genotypes 2 and 3, which is significant because some of the existing treatments have been a bit less effective in these genotypes. But what this means is that there is a range of treatments now, so that treatment can be individualised for more effective results.

Gerard O’Reilly from Ireland told his story to give the patient perspective and I found this to be quite inspiring. I have known him for quite a few years and he has lived through some awful times. In many ways the things he said in telling his story epitomises the stoicism and toughness of our community. He has HIV and hep C, he ended up having cancer and a liver transplant, and he is still going along and smiling and living his life. He told the story about his recent treatment experience. After his liver transplant, he had hepatitis C treatment, but unfortunately, with the extra complications of a transplant, relapsed after treatment. He expects to start retreatment in September. His story about his treatment made the whole experience real – it’s really important to have this perspective as well as the technical information. And it highlights the importance of treating hep C for people who are co-infected, because now that their HIV is often well-managed, it is the hep C that is dangerous to their health.

In Gerard O’Reilly’s presentation he commented that the cost of hepatitis C treatment is prohibitive in Ireland and I was very aware how fortunate we are in Australia to have the new hepatitis C treatments available to everyone on the PBS. A key message for me was that we have this window of opportunity for hep C treatment, and we as individuals need to step up and take action now. Treatment is now in tablet form so it’s not difficult to manage in your life. So I think it is terribly important that everyone does take the step to access treatment – it’s a responsibility to yourself; to make the difference to your life.

Suzanne: Which other sessions did you find valuable?

Gavin: There was an interesting session on ageing: they discussed the need for older men to take advantage of the benefits of what the new treatments can bring them – and the improvements to their quality of life and their length of life; but also the need to educate the younger generation about what the older guys have experienced so that they understand their own community and celebrate their achievements, and understand that the work to advocate for best practice treatment will continue for their generation as well.

The other important session was the women’s issues. The issues that they face are very different to men, with both their bleeding problems and how individualised their treatment plan needs to be. The Congress session highlighted that so many factors need to be taken into account over their lifetime, with changing hormone levels, menstruating, whether they are pregnant, growing older, menopause etc. In the last 10 years we have become more aware of the issues for women, and it is a very significant area for our community. Aspects of this are new  in many ways,  and I am really conscious that we need to work together closely with our community and our expert health professionals to understand and improve the situation for all women in our community.

Suzanne: Why do you think the World Congress is important?

Gavin: The World Congress brings everyone from around the world together and you feel very much part of the global community. Everyone is working together with a single goal of dealing with bleeding disorders and how best to manage them. Coming together and seeing people from other countries and how they deal with adversity is what drives us onwards – it’s inspiring and hearing what others face  gives us a real perspective on our own issues.