The final straw

It’s the final straw! My medical aid is paying a prescribed minimum benefits (PMB) out of my savings, again … writes Ari Seirlis

Isaac Newton once said: “If I have seen further than others, it is by standing upon the shoulders of giants.” I have appreciated this quote for years as it recognises the contribution others make to our success. I liken the quote to my dear friend Storm Ferguson, who has recently lost the battle to cancer. While I lost a friend to this terrible disease, the quadriplegic and paraplegic community has bid farewell to a giant in the human-rights advocating ring.

The 75-year old Storm, who was semi-paralysed, tirelessly advocated in favour of single-use catheters against a medical aid scheme giant. He demanded the funding he so rightly deserved. He often made mention to the fact that his days were numbered, however he knew that fighting for change was not just for him, but for those who wouldn’t have the means or ability to do so.

Last year, Storm took his medical aid scheme to the Council for Medical Schemes (CMS) … and won! The medical aid declined to fund the SpeediCath catheters as prescribed by his doctor after years of struggling with recurring urinary tract infections (UTIs).

This ruling now sets a precedence for all those with a neurogenic bladder and face recurring UTIs by providing access to a single-use hydrophilic-coated catheter such as the SpeediCath. While the case made strides, the fight against medical aid schemes and single-use catheterisation unfortunately continues.

Catheter reuse and its harms

In February, I attended a QASA roadshow about “catheter reuse”. Through my personal reusing of a catheter for months, I’ve had more than my fair share of UTIs. In one session, Professor Krassioukov from the University of British Columbia, shared finding on the benefits of single-use catheters, which reaffirmed my belief that this minimises my risk of getting an UTI.

The numbers that were shared in the session was hair-raising. Only 21 percent of individuals from developing countries (for example, South Africa, Brazil and Columbia) use a new catheter every time they catheterise whereas 88 percent of individuals from developed countries (such as Canada, United States and Italy) use a new catheter.

Around 71 percent of individuals from developing countries experience frequent UTIs compared to only 19 percent of individuals from developed countries who experience UTIs.

After the powerful evidence, it dawned on me that, in all the years that I have been using EasiCath and now SpeediCath, I have not had a single UTI. Thank goodness! No need for a visit to the doctor, the pathologist, a script or even one day in hospital.

Ignoring regulators while users pay

The challenge in South Africa is to ensure that patients have access to high-quality care with good clinical outcomes while ensuring sustainable funding. With the evidence-based clinical research done, why are we still at square one? Why are South African catheter users still reusing catheters?

It all boils down to what medical aid schemes define as “appropriate standard of care” and whether they are willing to pay for the treatment. I have witnessed many users being refused the catheters prescribed by their doctor with medical aids arguing that the catheters don’t fall within the PMB. Yet, the minimum level of care should be based on evidence, never cause harm or hold risk of harm for the users, which includes UTIs.

Medical aid schemes are obligated to fund the costs of PMB-related care in full without co-payments – something with which they don’t always comply. In addition, many users are unaware that medical aid schemes deduct the costs from their medical savings account.

Your rights and the doors to knock on

There is a toolkit available that guides you on what your rights are when it comes to funding and what process to follow when you are advocating for access to the medical products prescribed by your doctor. The toolkit also highlights whose door you should knock on when funding gets complex. In other words, are you lodging your complaints and voicing your frustrations with the right stakeholders? For more information on the toolkit, contact QASA at info@qasa.co.za or view the toolkit online by clicking here.

I know that Storm would want me to carry on the message and make sure that at least one reader doesn’t fall victim to the onerous admin and burden of fighting against medical aid schemes alone. May we continue to rise together and advocate for our rights and make Storm proud of the “advocacy giants” we have become.

Ari Seirlis is the former CEO of QASA and a member of the Clinical Advisory Panel, a research division of Spinal Cord Injury Rehabilitation. He is a lobbyist for the rights of people with disabilities. He advocates for catheter users and their right to refuse to reuse their catheters.

Seirlis often leans on the South African Best Practice Recommendations for Bladder Management, which states that single-use catheters are the gold standard for intermittent catheterisation as it decreases the risk of infection. In many of Seirlis’ public appearances he compares the reuse of catheters to the reuse of a cooldrink straw, asking audiences whether they would reuse their straw from yesterday? It is inconceivable that quadriplegics and paraplegics using intermittent catheterisation are expected to reuse!