Vitas House Hospice Annual Afternoon Tea Party

From left to right – Lillia Mootoo, Jacqueline Sabga (Chairman, Vitas House), Her Excellency Mrs. Reema Carmona, Lisa Hadad, Donna Stone, Paula Moses

REMARKS BY HER EXCELLENCY REEMA CARMONA AT THE VITAS HOUSE HOSPICE ANNUAL AFTERNOON TEA PARTY

REGENCY BALLROOM

HYATT REGENCY

PORT OF SPAIN

7TH MAY, 2017

The Vitas House Hospice has established itself as a type of institutional palliative, providing the terminally ill with quality treatment. At the heart of such treatment are core and active principles of human dignity, genuine respect and compassionate care. For the terminally ill, that erosion of personal independence and space, that sense of hopelessness and eventuality, can batter and even destroy the most resilient of spirits. It is made worse, if appropriate support systems that can help weather that life storm for the terminally ill, family members and friends are not in place.

As I stated last year, I lost my father a few years ago to the ravages of brain cancer so when I speak on the issue of terminal illness, I speak from an informed and lived experience. I am very much aware of the frustrations, the care required, the drugs needed, and what drugs cannot be sourced locally, the chances of survival and that feeling of helplessness. Many times, my family and I, would have our moments of desperation ably abetted and assisted by one of the world’s best physicians, Dr Google. Yes, that technology giant of a fellow, who provides you with the latest information giving you hope, and sometimes taking it away.
Each family member or care giver of a terminally ill cancer patient, who dies, becomes a veritable survivor with care giver burn out, and that underestimated fact, creates an unseen but spiritual bond that has us here today. We hold hands, by our sense of humanity and fellowship to each other and by a need to never, ever give up. Under the fine stewardship of Dr. Jacqueline Sabga, her executives and staff, the Vitas House Hospice is one vehicle that fruitfully drives this human advocacy to give self-worth, self- definition, comfort and respectful control to those in their final moments. Yes, so many of us here are truly survivors.
Howard and Jacqueline and the rest of the Sabga family circle, I empathise with you in your moment of great bereavement at the loss of that great son of the soil, Dr. Anthony Norman Sabga O.R.T.T.

Hospice care is critical to the terminally ill, providing a comprehensive and compassionate transition. It puts in place and provides for an interdisciplinary medical team, pain management, symptom control and spiritual and emotional bootstraps. These support those specific, individual needs and even the timely but urgent aspirations of the dying patient. Today, Hospice care has certainly gone beyond the stage of the 11th century when a Hospice was a designated place of refuge for those dying during those religious wars of the Crusades.

Dr. Michelle T Weckmann, writing in the American Family Physician, could not describe it better, the impact and true meaning of Hospice care, “Hospice is built around the key concept that the dying patient has physical, psychological, social and spiritual aspects of suffering. Hospice is a philosophy, not a specific place.” I recall reading sentiments expressed by a 68 year old terminally ill patient about what that philosophy, can do and has done. She stated “My Hospice care nurses have encouraged me to try to make the most of everyday. I say, I love you a lot more, and I try to be honest about my feelings to myself and to others.” It is indeed regrettable, that such expressed emotions triggered in moments of human peril and anguish, are not a daily feature and occurrence in our human interaction and discourse with each other.

There is however a mind set with regard to Hospice care that needs to be eradicated. There is a misconception that Hospice care is a way of saying all is lost, that it is about giving up on life, and even to acceding to a lower type of medical care. Genuine Hospice care is exceptional and I can say with assurance, that the Vitas House has passed that litmus test. Hospice care is grounded in ensuring a quality of life for the terminally ill. It gives back the terminally ill his/her sense of control over decisions to be made and things to be put in place. Within limitations of course, it provides the terminally ill with some measure of fulfilling that proverbial bucket list, social or otherwise.

We live in a world of enigma, where people in our Caribbean Region suffer not from the abuse of pain killers but rather from the absence of them. In the First World, there is a pandemic in prescription drug abuse for pain killers. Many in the Caribbean who require drugs like Oxycodone, Opioid Analgesics cannot simply source them and sometimes die painful deaths. We are often burdened by onerous regulations that are systemic and systematic with indifference, institutional apathy and not enough forward thinking and a perceived lack of care.
Having spoken to many health professionals and doctors, there appears to be a deepening concern with accessing promptly, old drugs and new drugs. Only today, in the daily newspapers, this fact was reiterated by the Honourable Minister of Health and it is anticipated that such a realisation and concern will trigger the necessary action. This has been an ongoing problem for many years in Trinidad and Tobago and the wider Caribbean. Hospice always supports palliative care and palliative care requires management with pain thresholds. Dr. Dingle Spence, a Jamaican Oncology and Palliative Medicine Physician has stated that although Opioids are available in her country and she quotes , “The supply is disrupted by so-called stock outs, — demand exceeding supply because of bureaucracy. There is not enough understanding about timely ordering. The amount of permits needed to bring them into the country slows down the timely flow.” I would add to this also the requirement of timely anticipation of necessary drugs.

Drug approval is a tick in the hide of Hospice care and general medical care. A major problem we have been facing for many years, is getting drugs approved for Vita’s House. There is a nagging delay in drug approval, and the systemic lack of initiative by the authorities to revamp and retool this whole process of drug approvals. I am painfully aware, that there is a particular medication that we, as part of the Vitas House Hospice family, have requested permission from the designated authorities to ease the physical plight of the terminally ill at Vita’s House, and for years nothing is forthcoming. Yet interestingly enough this drug has already been approved by the United States Food and Drug Agency (FDA) for many years. The harsh unmitigated truth, is that approval for the use of new drugs is not being addressed with the required speed and sense of urgency.

Why then must we go through the same process (this approval regime), in Trinidad and Tobago after thorough and rigorous United States Food and Drug Agency (FDA) approval? We are lacking funds, infrastructure and human resources to effect same. The same goes for all other medications. Let me be frank here, the United States Food and Drug Agency (FDA) represents international benchmark standards for the operationalization and use of new drugs, second to none. They have the resources, infrastructure and finance beyond the capacity of our burgeoning democracies in the Caribbean and this is what begs the question. Why are the United States Food and Drug Agency (FDA) approved drugs for the terminally ill and other patients years away from being approved locally and regionally?

Drugs are submitted for approval and the average waiting time for approval, I have been informed by stakeholders, is over 2 years. Sometimes by that time, the life span of those samples have expired and new samples must be resubmitted. Imagine, and I have been informed by suppliers, just for a change in the colour of the packaging or labelling of the same drug, the whole approval process begins anew and must be redone.

This delay is not just about time management or marketing strategies or even skewed bureaucracy but one that involves people’s lives, the terminally ill, family members and friends. Remember, absolutely no one, whether you are in a position of power or you have none, is exempt from the inevitability of sickness, pain and death. The inability to provide pain relief and other medications, may well be an infringement on one’s basic Human Rights. Having spoken to other stakeholders, the non-approval, of new drugs is further burdened by an environment that makes no comprehensive, informed provision for the execution of clinical trials involving new and experimental drugs.

As I speak, there are boxes of drugs and dossiers, waiting to be approved at the Food and Drugs Laboratory. I have been told subject to correction that the Food and Drugs Lab of Trinidad and Tobago like others in the Caribbean Region is simply overwhelmed through lack of resources, weak infrastructure and insufficient personnel, to fully and competently carry out its mandate. In this regard, I have a practical suggestion. The Bahamian Pharmacy Act No. 8 of 2009 supported by the Pharmacy (Import and Export) Regulations, 2010 is a guiding light is the business of pharmaceuticals. We in Trinidad and Tobago can probably consider adopting such legislation. We can adopt a system similar to what obtains in the Bahamas, regarding the standard and importation of drugs, whereby any drug to be imported into the Bahamas and hopefully in the future, Trinidad and Tobago, must meet one of the following prescribed international standards –
(i) The British Pharmacopeia;
(ii) The United States Pharmacopeia;
(iii) The European Pharmacopeia;
(iv) The International Pharmacopeia; or
(v) Any other Pharmacopeia as approved by the Minister of Health.
This not only saves time, but also money, as the authorities would be saved the expense of paying experts to approve the many dossiers submitted to them. The availability of drugs would decrease patient morbidity and mortality, easing the suffering of our loved ones. By allowing US FDA approved experimental drugs, we can also begin supervised clinical trials in collaboration with the various foreign entities and university hospitals possibly resulting in a decrease in our medical brain drain and patients leaving the country to access US FDA approved drugs and experimental drugs.

For example, two drugs used for pain in Hospice for terminally ill patients are Oxycodone and Vicodin approved by the US FDA for years and still not available on the local market. In May this year in 2017, the drug Radicava, a potential cure and life saver of Lou-Gehrig disease (a Motor Neuron disease) was approved for use by the United States Food and Drug Agency (FDA). At the present pace, approval of this orphan drug can take years forcing persons at home to utilize foreign currency to get proper treatment before they die. We need to stop twiddling our thumbs. We need to aggressively and proactively collaborate with our brothers and sisters in Cuba where clinical studies have revealed the potential of a cancer drug, Cimavax that cures lung cancer and other drugs that cure Paediatric Brain Tumours. The plight of those fighting in the trenches in the dispensation of palliative care at Hospice cannot and must not go unnoticed. The urgency of now demands immediate action from the requisite stakeholders and the designated authorities.

Thank you ladies and gentlemen.

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