Living Beyond the Diagnosis

As someone living with Multiple System Atrophy (MSA), a rare and terminal neurodegenerative disorder, I’ve journeyed through a world of uncertainties and challenges. But amidst this, the ‘Right to Try’ law stands out as a beacon of hope, yet also as a path loaded with complexities.

MSA is a devastating condition, gradually stripping away one’s physical capabilities, often leading to severe impairments and, ultimately, a shortened lifespan. With no known cure or significantly effective treatments, patients like me are often left in a desperate search for any possible remedy that might slow down or halt the progression of the disease.

Enter the ‘Right to Try’ law. This legislation, intended to provide terminally ill patients access to experimental treatments outside of clinical trials, seems like a godsend. For us, it’s not just a law; it’s a potential lifeline. The idea of accessing drugs that are still in the experimental phase, yet might offer some relief or a glimmer of hope, is incredibly appealing.

However, invoking this right is far from straightforward. Firstly, the experimental drug must have completed Phase 1 of a clinical trial and still be in ongoing FDA-sanctioned clinical trials. This criterion already limits the pool of available treatments, as many drugs might not have reached this stage.

Then there’s the challenge of convincing drug companies to provide access to these experimental treatments. Pharmaceutical companies are often reluctant to offer drugs under the ‘Right to Try’ due to concerns about liability, costs, and the potential impact on the ongoing clinical trials. They fear that adverse outcomes in ‘Right to Try’ cases might jeopardize the drug’s approval process or affect its development.

For patients like me, this reluctance is disheartening. We understand the risks involved with experimental treatments, but when faced with a terminal diagnosis, the willingness to take these risks increases significantly. The stringent FDA approval process, designed for patient safety, feels like a double-edged sword in cases like MSA, where time is a luxury we don’t have.

The procedure to apply for ‘Right to Try’ access involves navigating a maze of bureaucratic and regulatory hurdles, including finding a physician willing to supervise the treatment, gaining the drug manufacturer’s approval, and ensuring all legal and ethical considerations are addressed. This process can be overwhelming, especially when grappling with the daily challenges of a debilitating disease.

For many of us, the ‘Right to Try’ is more than just a policy; it’s a symbol of our fight against an otherwise unbeatable opponent. It embodies our right to hope and our determination to leave no stone unturned in our search for a semblance of relief or a chance at extended life.

In conclusion, while the ‘Right to Try’ law offers a vital opportunity for patients with terminal illnesses like MSA, the reality of accessing these experimental treatments is complicated and often disheartening. It highlights the need for more streamlined processes and greater understanding from drug companies about the unique challenges faced by patients with terminal conditions. Despite these hurdles, we continue to advocate for our right to try, driven by the undying hope that one day, we might find something that offers us more time, more moments, and a better quality of life.

As someone battling Multiple System Atrophy (MSA), I must express my profound disappointment with the current state of the Right to Try law. This law was meant to be a beacon of hope for people like me, offering a chance to access potentially life-saving treatments that are still in the experimental stages. However, the reality has been disheartening. Despite the law’s intent, the actual process of getting drug companies to comply with it is incredibly challenging. Their reluctance, often rooted in concerns about risks and impacts on their ongoing clinical trials, leaves many of us feeling abandoned in our time of greatest need. For terminally ill patients, every moment is precious, and the promise of hope that the Right to Try law was supposed to offer feels more like an unattainable mirage, leaving us grappling with not just our disease, but also with the crushing weight of missed opportunities for potentially beneficial treatments.

~Coach~