“We need to put health before profits, access before patents, transparency of price before trade secrets…” – An overview of Access to Medicine’s Live Conference 2020
By Ellen Corby, IGHN Professional Intern and Key Correspondent
In addition to causing widespread illness, the COVID-19 pandemic has brought about a reckoning for worldwide health systems. Vulnerabilities and systemic problems in healthcare systems around the world have never been more evident, along with the globally connected nature of modern human life. The annual Access to Medicines Conference 2020 was originally scheduled for April 7th and has been rescheduled for a date to be confirmed, later in 2020. However, on April 7th from 10:00am – 1:00pm Irish time (GMT+1), an online conference of experts in various fields took place, providing an online platform for discussion and debate on what the COVID-19 pandemic means for treatment access, both in Ireland and globally. While this health crisis presents a variety of challenges to collaborative efforts and partnerships, the success of the Access to Medicines online conference, which welcomed over 280 attendees, evidenced the health community’s ability to adapt to an unprecedented situation quickly and effectively. With regard to COVID-19, the conference made two things clear: that the only way that the world can hope to control, mitigate and eventually defeat this and future emerging novel illnesses, is through a global health approach; and that this will necessitate a vast shift in political and ideological viewpoints.
Mr. Robbie Lawlor, one of the founders of Access to Medicines Ireland, gave the welcome remarks for this conference, including a brief Introduction to the Online Format. He then introduced the moderator for the conference, Ms. Susan Mitchell, Deputy Editor of the Business Post, along with Ms. Emily O’Reilly, European Union Ombudsman and writer, who gave the opening remarks of the conference.
Ms. O’Reilly commented on the unprecedented time during which this conference is taking place, pointing out the vital role that those attending and speaking at Access to Medicines 2020 will play; in data sharing, discussions of pricing and availability of medicines, vaccine development, and the effect of these times on the most vulnerable groups in society. She highlighted the issue of inequality and inequity in access to medication laid bare by the pandemic throughout the world. When vaccines and treatments become available, she asks “Will health be viewed as a commodity or as a public good? And will political leaders recognise that national self-interest is best served through global collaborations?” Ms. O’Reilly evoked the harsh lessons the world learned from the AIDS epidemic, and the continued struggles in the provision of vital medications.
She stated that this crisis has acted as a galvanising force for government to take positive, dramatic and bold actions against the disease.
Panel 1: “Is the Current R&D Model Fit for the COVID-19 Challenge?”
Professor Sam McConkey, Professor of Infectious Diseases in RCSI Ireland, presented on COVID-19 Treatments on the Horizon. Prof. McConkey spoke about his own monitoring of the disease from early stages in January and his continuing focus on finding and evaluating scientific interventions and drug trials for the virus. The options in these cases are to explore already established medications such as Hydroxychloroquine, adapting vaccines that are already in trial for other diseases, or to develop a totally new drug or vaccine, which usually takes 2-3 years to standardise and distribute. He emphasised the challenge of distributing drugs and rewarding the development in an equitable way, but also the importance of enabling behaviour change within the general population. It is clear that the public’s approach to, and awareness of, the importance of basic prevention practices like handwashing will be a major change in the wake of this crisis.
Professor Luke O’Neill of the School of Immunology in TCD, presented “A Frenzy of Activity: Vaccines, Antibodies, Anti-Virals and Anti-Inflammatories to Crack COVID-19”. Prof. O’Neill defined his role as outlining the scientific developments around the virus, and about who will get access to treatments once they become available. He mentioned the spotlight being shone on politicians, healthcare workers, scientists (and the issue of lack of scientific rigour in rushed papers), and the drug discovery business. “The world we will emerge from after this is over will be a different world for definite” and for the world of pharma, Prof. O’Neill believes this change could be positive.
He spoke about the lessons we can learn from the BCG vaccine which, primarily used to prevent tuberculosis, is appearing to aid in resistance against a whole host of other diseases such as malaria. He emphasised that having this vaccine absolutely does not guarantee protection from COVID-19, and that continued measures are needed to keep ourselves safe, but that it is an idea to be explored. There are 41 companies working to develop a vaccine for COVID-19, and there is hope that this will be successful and accessible within the next two years. But the question remains, he says, who will pay for the distribution of these treatments, and how?
Dr. Andrew Hill of the University of Liverpool spoke next on the topic of Drug Shortages during the COVID-19 Crisis, taking us through the experimental phase of treating the virus, using the frameworks of treatment plans for other viruses, and trying out how they work. Dr. Hill outlined the measurements and pricing scale for several drugs (his papers on the subject will be published this coming Friday the 10th April 2020 in the Journal of Virus Eradication). He points out the difference between the expense of making drugs and the cost of buying in pharmacies in countries like the US, e.g. Sofosbuvir sold at 18,610 USD in the USA, vs. 6 USD in Pakistan. The ability to mass-produce drugs at affordable prices is there, and so we must push to produce effective, affordable drugs when indeed we find a treatment for COVID-19 globally.
Dr. Ellen ‘t Hoen of the School of Medicine, Law and Policy, USA, presented COVID-19: Learning from the Past and possible approaches to the challenges ahead. Dr. ‘t Hoen re-iterated that the overall goal will be to produce an effective vaccine and treatment, and to make sure that this is affordable and accessible to all countries equitably, but that “the likelihood of that happening automatically is close to zero”. She spoke about the various stakeholders within pharmaceutical circles, and the pressure required in order to combat the impulse to profit from this crisis, through legislation and patent law that would lift the potential monopoly effect. She stressed the importance of equitable access to medicines, saying that even from a selfish standpoint, only through world-wide distribution of medication and treatments for COVID-19 will any country succeed in totally stopping the spread. Dr. ‘t Hoen pointed out that lessons on what not to do, in terms of equity, can be taken from the HIV pandemic, as it was years before those in LMICs (low and middle-income countries) could consistently access medications that were available in the Global North. She said that “while it is understandable that governments today are focused on domestic need, they also need to come out of their nationalistic shell and endorse global initiatives and global approaches because no country can do this on its own”.
During the first panel discussion, Dr. Ruth Freeman, Director for Science and Society in the Science Foundation Ireland, asked in what ways researchers can be the most focused during this time (SFI have upped their investment in research with their rapid response call to mitigate the effects of COVID-19). In response to the subsequent discussion, Dr. ‘t Hoen pointed out that planning for global access to medication must begin now in order to ensure equitable and efficient distribution of these medicines whenever tested and proven treatment methods do become available. Compulsory licenses and patent barriers must be taken into account by the WTO, and financing of medicine development should come with a caveat that any promising treatments discovered using this funding should be distributed equitably. And both Prof. McConkey and Prof. O’Neill pointed out that Ireland has a role to play globally, both in the area of research and politically, and that Irish laboratories are connected with labs around the world. The panel each urged the movement away from nationalism in health system responses, and towards international health systems co-operation, partnerships and solidarity. Dr. Hill also pointed out that attention must be paid to access to other basic generic medications used during the pandemic to treat non-coronavirus related illnesses and symptoms. In response to an audience question, Prof. McConkey agreed that both centralised and international responses to drug trials are vital, and Dr. Hill emphasised the importance of pricing controls if established medications are proven to be effective against COVID-19.
Panel 2: COVID-19: The Opportunity for Socio-Cultural and Political Reform
Ms. Kay Curtin is a Patient Advocate for those living with a serious illness and spoke about the difficulties of living in an uncertain time, concerns over a lack of access to treatment, and the human cost to patients at this time. Ms. Curtin spoke about the varied factors that can influence the reality of accessing treatments or medication: timing of diagnosis, location, government policies or your ability to pay. She then spoke about the effect of COVID-19 as an added hurdle to accessing care. Many patients have been waiting years for new life-improving treatments but due to the current crisis, “they are living on a tightrope until a solution for COVID-19 can be found”. Delays in access to medications and treatments that are usually consistently accessed may mean that those who have been living well with their conditions may experience a retrenchment of their progress. She emphasised the importance of maintaining equality in the perceived value of individuals, dealing in humanity rather than economic outcomes.
Ms. Jacqui Browne as also a Patient Advocate and a member of the IHREC Disability Advisory Committee. She presented next on the Ethical Concerns, Questions and Imperatives from a Patient Perspective during a Pandemic.
Ms. Browne raised the issue of the Irish Department of Health’s document “An Ethical Framework for decision-making in a pandemic” for which they seem not to have consulted patient advocacy groups or those of vulnerable populations. Ms. Browne stated that the document made no reference to UN rights conventions or the Irish constitution, and said that further clarification in plain and accessible language is needed. Once again, Ms. Browne highlighted the importance of equality in access to information during this time, along with treatments. Protecting the right to health for all people, including those with disabilities – “protecting public health in a general sense is not enough” – there must also be protection of people on a personal and social level, with a focus on those who may be disproportionately effected by this crisis.
She points out the issues with the governmental policies on consent and next-of-kin. Disability should not factor into access to treatment or medication during this crisis. We must strive to further strengthen government bodies’ and the Pharmaceutical industry’s ability to collaborate with EU health regulations to ensure access to medication for all groups.
Dr. Gaelle Kirkorian of Médecins Sans Frontières [Doctors Without Borders] spoke on the Need for Radical Changes to Ensure Access to Essential Health Tools, in the context of the current crisis and beyond. Dr. Kirkorian stated that it is “high time that we stop pretending that the reliance on the market mechanism is fit to provide medical care and health tools to people who need them”. It creates huge gaps in service provision and care, and the world is now experiencing when there is a breakdown in access. Before COVID-19, the number of people who lack access to treatment was growing in every country, including developed countries; shortages of basic medications such as antibiotics, morphine, insulin and even penicillin is often experienced globally, as there is no monetary incentive for companies to invest in their manufacture.
With vaccines, the issue often arises due to a reliance on a limited number of manufacturers, and monopolies on development. Due to the current COVID-19 crisis, rationing issues are now spreading globally due to governments’ decision to rely on globalised supply and market forces, while failing to maintain and protect their local facilities. The COVID-19 pandemic and vaccine research provide an opportunity to reimagine our health care systems, plan from day 1, and reprioritise within health areas: what exactly do we need? how much exactly does it cost? Who is paying? How do we guarantee access for all? These terms define terms in a social contract that guarantees accountability. We must urge governments to change the rules/norms to ensure transparency and organise collective governance.
Mr. Darren O’Rourke is a Sinn Féin TD and PhD Scholar, and addressed the Politics of Access to Medicines Reform, especially in the context of COVID-19. Mr. O’Rourke reiterated that the current pandemic is showcasing that the health system in Ireland and globally is not fit for purpose. Issues often manifest in the expense of higher-tech drugs, with patients caught in the middle. He praised the fact that, in Ireland, there is a general public assumption of free and available vaccines if/when COVID-19 vaccines become widely available, which indicates both privilege and a positive socialist expectation for the health system. He also pointed out that it is possible that we would be closer to a vaccine now if research into SARS/MIRS had continued past the point when it was no longer profitable to do so. However, he believes that the severity of the COVID-19 pandemic “is a fundamental shock to the system, and it will create new ways of doing things”.
Mr. O’Rourke also highlighted the positive public and systemic reactions to the pandemic in recent weeks – social supports, nationalised healthcare, rent freezes etc., and this points to the interdependent nature of society in Ireland and globally, which stands in contrast to individualistic attitudes seen in the last decade. Therefore COVID-19 presents a possibility for positive change, and equally for negative change. We must be careful as we move forward. “System reform is possible, but it will require political will”, and we have significant room in Ireland for increased transparency and requiring more of our governmental institutions.
Mr. Diarmaid McDonald of Just Treatment UK presented on COVID-19: A devastatingly costly way to learn lessons. He concurred with previous speakers that crises like this lay problematic aspects of health systems bare, highlighting vulnerabilities and showing the priorities that we have determined within these systems. Due to SARS and MIRS, Mr. McDonald said, we knew that coronaviruses were proving dangerous, and we missed opportunities to be further along in investing and developing vaccines and treatments for such viruses.
“The entire system of developing medicines in our Western capitalist society is highly socialised with huge amount of state and public funding underpinning it”. At the same time, we struggle with a fundamental failing: we have designed a system that disincentivises the private sector investment into preventative medicine. Due to very high pricing of medication and a lack of social safety-nets, we have weakened our ability to systemically prepare for such a pandemic. We must design a system that values life and dignity, not one that glorifies profiteering.
To start off the second panel discussion, Lord David Chidgey, UK Liberal Democrat politician focused on healthcare in Africa, pointed out the lessons we can take from the Ebola outbreak, such as the importance of trusted community leadership and access to healthcare in rural areas. He asked what actions are being taken by governments and institutions to support the dissemination of accurate information on COVID-19, and to support community ownership of the fight against COVID-19?
In response, Dr. Kirkorian pointed out that the policy of rationing masks and testing has often been framed to the public through a medical lens, presenting the necessity of these measures as not medically beneficial, rather as an honest presentation of the lack of capacity experienced. Mr. McDonald also encouraged a push for further transparency and a properly resourced media that will call out governmental bodies.
Oliver O’Connor, Chief Executive for the Irish Pharmaceutical Healthcare Association (IPHA), also contributed to the discussion. He stated that this is a time that required deep collaboration nationally and internationally, from funding to operations, and that currently patients are being affected by increased waiting periods for necessary treatments. The challenge will be creating a co-funding model in which medication is clinically desirable and available to patients. He expressed the hope that this crisis will result in galvanisation and innovation in the area of patient access.
Darren O’Rourke pointed out the oxymoron of the public not having access to government “Open Discussions” and pointed out that the issues are simply symptoms of a broken system that prioritises profits for large companies. Commenting on this point, Kay Curtin stated that from the patient point of view “The word ‘innovative’ is thrown around a lot, but really nothing is innovative if patients cannot access it”, and therefore in this current climate of crisis, innovation has been halted. She pointed out that though it is natural to turn focus and funding to COVID-19, she has huge concerns over the coming recession and patients as collateral damage.
Mr. McDonald added that Ireland is not unique in facing these challenges, and that public pressure is one of the only responses that helps to force fairness and inequality in access to medicines. Dr Kirkorian concurred, emphasising the importance of transparency not just in funding and development of treatments and vaccines, but throughout the trial process. Ms. Browne commended the shift we have seen in Ireland, both governmentally and societally, in the past few months, and encouraged striving to maintain this drive in the future. Ms. Curtin added that from the patient point of view shifts have also been observed, as this crisis has shown that new protocols regarding online consultations etc. are available to patients. Darren O’Rourke agreed: “The future is up for grabs… the light has been shone on these practices”.
Ms. Susi Geiger of AMI and Misfires UCD gave the closing remarks of the conference, thanking speakers and reminding attendees that the AMI full-day conference will go ahead, later in 2020. She suggested that social ethical policy issues are an acute symptom of a global healthcare system that needs to be reimagined, and that AMI will not stop lobbying for further advancements in patient access.
Mr. Diarmuid McDonald stated that collaboration will be the thing to pull up through this crisis, and from the full online conference, it has been made clear that this crisis will require us to look outwards: to other people, other communities, and other countries.
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