Game of Transparency: the inequality of living with a disease and access to medicine

By Eunice Phillip, Key Correspondent for Irish Forum for Global Health

“The pain is unbearable, the wait, the gloom of unknowing. I did not choose to be a patient with a terminal illness. It is not what anyone chooses. We do not choose where we are born. I was born in Ireland- a rich country and it is still so difficult.”

What reads like an excerpt from a fiction novel, was a heartfelt recount from Kay Curtin about her experience of living with stage IV melanoma. Kay shared her 15 years’ experience of living with the disease at the 3rd annual Access to Medicine conference held in Dublin in April 2019.

It would seem far-fetched if we were to tell the millions of people in low-resourced countries that, many living in high-resourced countries also struggle with access to medication to stay alive. And that the inequality of entanglement for those who are “made to bear the burden of healthcare” is now a universal agony to those without access to medicine. But, it is a reality.

It is a paradox that many speaking at the conference attempted to unravel, each with the view that access to medicine is not luxury, but a basic human right. The violation of that right has insidiously made its way to being a global crisis, with no demarcated geographical boundaries.

What is the justification of the lack of access to medicine in low-income countries ostensibly from limited socio-economic development, if patient such as Kay who lives in Ireland, a country with a GDP figure of $376,101 million, with (Europa) 2019 economic forecast growth of 4.1%, also lack access to medicine? A failed one. The upper-middle and high-income countries, for example, accounts for over 58% of all global hepatitis-related deaths. The lack of access to medicine is a flawed ‘game of transparency’ which favours the profit-making few at the expense of millions globally.

Transparency in research and development (RD) and pricing. I own my knowledge!

The development of 25% to 33% of new drugs begin at public university campuses. A fact, therefore, that means such knowledge belongs to those universities. It is also a fact, that collaboration between research and industry is not a new concept. Such collaboration between the UK, US to mass-produce Alexander Flemings’ miracle find ‘Penicillin‘, saved millions of soldiers in dire need during World War II.

What is new, is the permission, disguised and granted under patent laws, to brand and seal the lives of many in need of treatment and medication for life-threatening diseases such as cancer, hepatitis and HIV. Michael Harty, the chair of the joint Oireachtas Health committee in his address to the delegates expressed the need for a policy to have control over the way drugs’ knowledge is sold. A patient-centred policy with unrestricted access in the sale of intellectual property that is transparent, and fair. Achieving this, will decrease the exorbitant prices of these medications, and increase the availability to millions of patients, who according to Dr Ciara Conlan (AMI), are faced with the knock-on effects of these high prices.

Transparency in clinical trial… Pick me!

It was baffling how unethical, the ethical law governing clinical trials are, as Kay unfolds the various tiers of criteria the patients must subject themselves to for admittance to clinical trials. “Are they just for perfectly selected people?” she asked. Her account of the crippling effect of waiting in-between clinical trials however leaves no confusion about the devastation inherent in the prohibitively selective criteria of clinical trials.

It cannot be ethical. The gnawing pain and horror of patients experiencing the ‘pick me’ game of who lives and who dies. The hope of getting into the clinical trials, and whether if lucky enough, you are lucky enough to be picked for the “you can live” group. The anguish of a rejection letter was best captured by Kays’ interpretation of the reasons for rejection “you are too old; too young; too safe; not too sick enough; wait till you get to stage 4 and the trial has just closed, try later.”

The burdened roulette wheels

The emotional burden of the lack of access to medicine was subtle. Almost drowned in the laughter that erupted in the auditorium when Kay spoke about the offer for her hand in marriage to get her access to medication that will save her life. How different is this from child-bride, gender inequality and other forms of inequalities?

Is the global goal to end poverty by 2030 possible, when patients are burdened with the task of advocating for access with unpaid time, at the expense of their health, and spending life savings for a chance to live, for just another month? Unpaid time away from loved ones, to seek medication reimbursements, to avoid dipping further into poverty and “running into an iceberg where access to medicine is not possible for most people” is a scandal.

Stand together, not alone

To tackle this global health crisis that has no demarcated physical, emotional and geographical boundaries, we cannot continue to skirt around tags of intellectual property, clinical trials and the exorbitant pricing of medications. National and international policies must stand up and change the way research and development, and pharmaceutical industries play with the lives of over three billion people globally with no access to medicine.

To implement policies, the inequalities must end and the trend of the estimated 10 million people that die every year due to lack of access to medicine must be prevented. Kay stresses in her final remarks, the need for more evidence-based patients to amplify and strengthen the voices of the advocates and for everyone to stand together in addressing this gross inequality.

So that, when I asked a terminally ill patient at the next conference of her greatest fear, the response will no longer be:

“Do I feel that my voice has made a difference? I can only hope, as I can make better use of my time. For no individual patient should have to face this and the media alone.”- Kay Curtin.