As I write this, I am waiting for my immune system to grow back after having it all but wiped out in an attempt to control my multiple sclerosis. The treatment that I have just undergone — a series of five daily IVs, with another three to follow in 12 months — was approved by the Pharmaceutical Benefits Scheme in March. The criteria state that because of the risks involved, a patient must have “failed” at least two previous treatments in order to be eligible for Lemtrada. I’ve “failed” four, each more aggressive than the last. The daily self-administered injections, the oral capsules, the monthly IVs — none of them lasted for longer than a couple of years. Lemtrada, my neurologist tells me, should “reboot” the immune system that has turned its firepower against the body it is supposed to protect.
Rebooting the immune system carries risks, as you might expect. I was signed on to a patient monitoring program called Bloodwatch, a name that sounds ominous — although to a Buffy-tragic like me also rather cool. Bloodwatch comes with a mobile phone app and a schedule of monthly blood tests from now until July 2019, with helpful text message reminders as the day draws near. It also has an alarm system in place if the results look dodgy, which I got to see in action last week when it sent out an URGENT text message to me, my teenage daughter/next of kin and my neurologist to let me know that it had detected “an important abnormal blood count” and that I should seek immediate medical attention. After another round of blood tests, I was sent home to ponder whether given the likelihood of at least one repeat performance from Bloodwatch at some point between now and 2019, I ought to invest in a phone with a more reliable battery life.
As gruelling as the Lemtrada treatment has been so far, it’s less gruelling than the hammerings that the multiple sclerosis itself has dished out — and some people living with MS are prepared to go to far greater lengths and take far greater risks to reboot their misbehaving immune systems. Autologous haematopoietic stem cell transplants (AHSCT) are widely regarded as a promising line of research into the treatment of multiple sclerosis. And the limited availability of AHSCT within Australia is a source of enormous frustration and anger to many people living with multiple sclerosis.
AHSCT it is still regarded as both experimental and high-risk, and so is only available via clinical trials to patients fitting a specific profile. For some of those who have invested their hopes in a cure, this is an intolerable denial of their rights as patients. And if they cannot obtain AHSCT in Australia, they are prepared to pay upwards of $100,000 to be treated overseas.
The belief in AHSCT in some multiple-sclerosis online discussion groups is absolute. The only permitted topics of discussion are “how” and “where” to undergo the treatment, and those who raise the question of whether or not to go through it at all are quickly either pulled into line or booted out. If you think that the anti-vaxxers are conspiracy theorists, you haven’t met the stem cell believers. According to them, the reason that AHSCT has not been officially recognised as a safe and effective cure for multiple sclerosis is because pharmaceutical companies and neurologists profit from keeping patients dependent on the disease-modifying drugs that are currently the only approved option.
I was kicked out of one closed Facebook group for posting a notice about an information session about stem cell treatments featuring a senior Melbourne neurologist. For the stem cell believers, neurologists are the enemy, and the leading national patient advocacy organisation MS Australia is not much better. Newly diagnosed patients are urged not to listen to such nay-sayers, but rather to mortgage their homes and and set up a GoFundMe page in order to finance their trip to Russia, Israel or Singapore for a stem cell transplant. Mainstream media often reports these campaigns as a feel-good story in which a local community rallies to raise funds for the young Aussie battler who is prepared to go to any length to defeat multiple sclerosis.
The budget option is provided by various unregulated clinics within Australia that charge patients in the realm of $10,000 for unproven treatments. Earlier this year, the TGA issued a discussion paper as part of its consultation into the regulation of autologous stem cell treatments, with calls to close the loophole that allows such clinics to operate. The Australian reports that one such self-described “anti-ageing and cosmetic physician” has attempted to legitimise her treatment for multiple sclerosis by applying to register it with the official clinical trials database.
I’ve never regarded myself as a fan of Big Pharma, or of government regulation for that matter. I’m not thrilled at having installed an app developed and financed by a multinational pharmaceutical company on the same mobile phone I use to store my family photographs and exchange the politically subversive text messages that Attorney-General George Brandis is so keen to get his hands on. But multiple sclerosis is a disease that is suffered by mostly white people (I suspect that my brown skin may have made me look like an unlikely candidate for MS during the lengthy pre-diagnosis period), in developed countries, in the prime of our tax-paying lives. I can’t visualise a scenario in which Big Pharma would come up with a cure and then decide to withhold it from us, just for the lols.