Living with PH

My eldest daughter, Jenna Lowe, was diagnosed with Pulmonary Arterial Hypertension when she was 17 and already well into her disease. Living in South Africa with little access to expertise and treatments meant diagnosis was slow and sourcing the treatment she  near impossible. I, her mother and primary care giver, personally lobbied local Medical Aids, The Medical Control Council of South Africa (for permission to bring treatments here that were registered elsewhere in the world but not available here) local government and parliament to highlight the dire need for organ donors in SA; and media to build a profile for the disease and Jenna in order to source what she needed to extend and improve her quality of life.

As diagnosis and treatment were so late into her condition, by 20 Jenna desperately needed a bilateral lung transplant but the chances of her getting organs where nearly zero. Again we lobbied and started a national campaign - Get Me To 21 - (now the title of my book) to rally the nation to sign up to become organ donors. Beautiful Jenna; who was no longer able to leave her room, on full time supplemental oxygen and 3 other treatments that we were personally funding, bringing to SA and administrating; increased the organ donation rate by 267% in three months with her media drive – 'Get Me To 21' was a national success and won many marketing awards. Jenna was awarded Lead SA’s Youth Hero of the Year.

She received her lungs, but passed away following six horrific months in ICU in June 2015. Since then we, her parents, have started The Jenna Lowe Trust (www.jennalowe.org) and help fund a clinic at Grooteschuur Hospital in the Cape and continue to raise much-needed awareness for the disease and for organ donation. Patients are still dying as a result of not having access to treatment – it is desperately sad and avoidable. Six months after Jenna’s death my husband, Stuart, was diagnosed with Multiple Myeloma. Again we fight for treatment – we import it from the States and cash in everything we have to pay for it.

Where is the model of care that is patient focused and patient-centric in order to drive support for those families suffering from Rare Diseases and NCD’s that require additional phycological, financial, nutritional and wellness support between specialist checkups? Patients and their care givers live with their illness and challenges 24 hours a day, their doctors live with them for half an hour at every checkup. Where is the support? Especially for those living in countries that do not have a first world care system and access to treatments. Why are big pharmaceutical companies allowed to get away with charging such high prices? Surely a different pricing structure should apply to countries that don’t have NHS or centers of excellence.

How did life and death become about money? The poor have no access, the rich thrive and the middle classes must sell everything to pay for drugs to keep them alive leaving their families destitute.  There has to be a better way. We are a well-educated middle-class family who had the means to fight, make waves and make a difference, but many don’t. Many are not empowered as we are, and even so we have lost much (in fact most of our financial stability) in an effort to keep my daughter and my husband treated.

I waged an epic battle for three years in order to get treatment for my daughter that is otherwise freely available to people in many other areas of the world. Yet their lives are in no way worth more than hers? The late diagnosis, lack of treatment options and expertise contributed to her tragic and untimely death at age of 20 and yet she has, and continues to, impact so many lives. Because of Jenna there is greater awareness of organ donation in SA. Because of Jenna there are now clinics in SA that can offer some expertise and some treatments for PH (not nearly enough, but some). Because of Jenna we knew to find and fight for the right treatment for my husband, Stuart, that he needs so desperately to manage his Multiple Myeloma (bone marrow cancer).

Because of Jenna I have trained to become an Integral Life Coach and I now coach many people on the tools of Authentic Resilience (a model I have co-authored), on grief, loss and trauma. Because of Jenna I wrote a book – Get Me To 21 that is a best seller in SA. Because of Jenna I spoke at the 6^th World Symposium of Pulmonary Hypertension. Because of Jenna many people’s lives have been forever altered and improved … we must share our stories, our narratives, we must share them to better and change the future for other sufferers.

We are more than our trauma, we are more than our disease. The spirit of human nature is deep and wide and you will and can prevail, no matter what the outcome of your current situation. Don’t take no for an answer unless there really is no other to option; remain knowledgeable and empowered; take ownership of your care, treatment and illness so that you are not a victim; stay engaged in life and live with an open heart even whilst you hold the fear of your own mortality; hold your family and your loved ones close; hold yourself even closer because you are enough.

We cannot always control what we inherit or the events that happen in our lives; but we always have agency and the ability to choose how we respond to them. Jenna taught me that. Aged twenty, she died with dignity, grace, courage, poise and purpose knowing she had made a difference in this world.

There is no hierarchy of suffering and wellness, no relative graph on which to plot who receives treatment and who doesn’t, all patients deserve access to care, treatment and expertise no matter who they are or where they are living. We need to find a way to make that work and we need to ensure that pharmaceutical companies are not allowed to charge exorbitant prices for drugs that end up ensuring that only the rich get to survive. It is bordering on criminal. First world cities should twin with third world cities so that Centers of Excellence are forced to provide support to doctors in third world countries to increase their knowledge and expertise and support them through difficult cases.

Rare diseases require a patient-centric model of care that take all aspects into account, not just treatment, but psychological, nutritional and educational support for the patient and their carers and families. How do we ensure all patients can access all available treatments at an affordable cost that is the main challenge. If there is a drug to help then everyone should be able to access it.