A Referral Delayed Five Years: Why Timing Changes Everything

Going to Africa to do camps is not the answer. That has been tried over the last 30 years by half a dozen people I know. It does not work. It is a financially profitable proposition to go and operate 30 to 40 cases and come back with a reasonable amount of money. But 30 or 40 lives saved is not an answer where 30 to 40 million lives are at stake. The answer is training, treating, and timing.

I would be happy to dedicate a little of my time for weekly or fortnightly consultations. I am happy to travel economy, live a very normal life for 10 to 15 days, and train a bunch of doctors in one specialty clinic on the ABCDs of seeing a valvular heart disease patient, the ABCDs of reporting it, how to follow them up in the community, and what the relevant paperwork looks like.

Africans are not genetically or racially predisposed to have valvular heart disease. It is primarily the socioeconomic factor which makes rheumatic heart disease such a huge problem, almost 20 times the global burden. The lowest rates of calcific and degenerative valvular disease are also found in Africa, which confirms this is not a biological phenomenon.

For stenotic lesions, whether mitral or aortic stenosis, we ought to be talking about orifice area, orifice area indexed to body surface area, pressure half time, and pressure gradients. For regurgitant lesions, it has to talk about jet surface area, vena contracta, pressure half times, and flow dynamics. You ought to be talking about valvular heart disease in terms of the AHA classification of A, B, C: at risk, progressive, and progressed.

What today would be a 10,000-dollar problem, tomorrow might become a requirement for an LVAD or RVAD and turn into a quarter-million-dollar problem. It is only this afternoon that I wrote such an email for a 14-year-old girl from North Africa, asking for a quarter of a million dollars even to begin treating her. She is in complete heart-lung failure. She is the fourth sibling to have hereditary congenital pulmonary hypertension. Three of them have died.

In the case described, what would have been a 10,000-dollar problem before treatment could have stayed simple became a 250,000-dollar one after five years of delay, as the disease progressed to complete heart-lung failure requiring far more intensive intervention.

Not necessarily. The patient in this case was seen by specialists throughout and had multiple echocardiograms, but the scans were, in the surgeon's own description, completely irrelevant, despite DICOM imaging being shareable across continents within minutes.

Primary delays come from limited access and poor health-seeking behaviour, so patients don't present even for predisposing conditions. Secondary delays happen once a patient reaches a hospital but cannot access the right physician. Tertiary delays occur when a patient isn't started on appropriate preventive therapy, making the eventual complications far more costly and devastating than what could have been prevented.

A straightforward lung transplant performed early, as would have been possible five years before this case escalated, could have allowed the patient to live decades of normal life, compared with the quarter-million-dollar, high-risk treatment required once the disease reached complete heart-lung failure.