Inside: Learn how Clara Health gives patients the power to access advanced healthcare through clinical trials and research.
“This piece is being sponsored by Clara Health and was created to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much-needed awareness about the power of breakthrough research.”
I’ve written extensively about the lack of resources available to ALS patients. It’s been seven years since the Ice Bucket Challenge went viral, raising millions of dollars for ALS research, and we still don’t have an effective treatment.
Albeit, like many other neurodegenerative diseases, the research is complex. For this reason, groundbreaking developments can be painstakingly slow.
But while therapies get caught in FDA red tape, ALS patients are succumbing each year to this tragic disease without any options for help.
Running Out of Time
The average prognosis for an ALS patient is between 2 to 5 years.
When patients are diagnosed with ALS, they’re given a pamphlet on how to grieve and told to “get their affairs in order.”
In the midst of turmoil, ALS patients and their families are left scrambling to manage new financial burdens (estimated at $250,000 yearly), murky social dynamics, and overwhelming grief.
The disease progresses so rapidly that each moment is to be savored. As a current ALS patient, I can attest to fawning over every tick of the clock since my diagnosis.
Set aside time restraints, and ALS patients and caregivers frankly don’t have the energy or strength to spend hours researching possible treatment options.
Out of Options
I have a rare form of motor neuron disease that makes my arms paralyzed. My doctor’s have never suggested a clinical trial, even though I’ve been vocal about my willingness to try anything – even if only providing a modest benefit.
Before my health struggles, I didn’t understand the inner workings behind the patient-doctor relationship. It’s something you begin to master after multiple cross-country doctors’ visits and extensive medical disputes.
(The prerequisite course, “How to Navigate the Healthcare System 101”, should be required for every freshman entering college…)
However, I now know that doctors are there to diagnose you and offer FDA-approved treatment options. Rarely, will they guide you to alternatives, such as clinical trials, on their own volition.
I look in the mirror every day and see a new bone protruding from my sagging skin, an unfortunate side effect that has appeared decades earlier than it should. I’m literally witnessing myself become trapped inside of my own body.
I speak on behalf of ALS patients everywhere; we’ll try anything to avoid replacing future promotions, graduations, and vacations with feeding tubes, ventilators, and eye-tracking software.
Patients Have Power
Fortunately, there is one bright spot emerging amongst a sea of disappointments for ALS patients.
Clara Health is a healthcare company that offers a simple, fast and patient-friendly way to connect ALS patients to the newest treatment options.
Simply put, ALS patients have the power to access a digital library of potential life-changing clinical trials at the click of a button.
Clara Health even has 24/7 live assistance to support you during those times when you wake up at 2 AM with sudden anxiety-ridden epiphanies about your future.
So, how does it work?
Clara Health offers several options for getting started.
- You can head over to www.clarahealth.com/ and create a profile where you’ll then be matched with clinical trials tailored to you.
- However, if you just want to take a look around before taking the plunge, you can search through their database of over 56,000 trials to find a study.
- If you have specific questions, want someone there to help you through 100% of the process, or simply want to learn more, you can also reach out to one of their patient support specialists to help get you started.
After applying to a clinical trial, you’ll typically speak with someone from the study team over the phone. They will ask you a few questions to determine if the trial is a good fit for you, and they may have you come in for additional tests before beginning the participation process.
OK, but how much does it cost?
Here’s the best part: it’s FREE.
While certain trials may be associated with a fee, most are entirely free. If you don’t have insurance, you may have to cover the routine patient care costs which are typically covered by a provider.
For a more in-depth look into how clinical trials are funded, visit Insurance Coverage and the Cost of Clinical Trials.
Finding a Cure through Research
ALS is a 100% fatal disease.
When weighing the potential side effects of an experimental treatment with the devastating prognosis of ALS, entering into a clinical trial seems like a no-brainer.
Consequently, a cure will never be approved through the FDA, if drug companies can’t find patients willing to sign up for the clinical research required.
The bottom line is that ALS patients need access to medication and FAST. Clara Health helps accelerate the process by revolutionizing the antiquated ways of searching for clinical trial participants.
I would encourage anyone, regardless of disease, to consider signing up for a clinical trial through Clara Health. Their caring Patient Support Specialists are there to help you through every step of the process.
By signing up for a clinical trial, you’re contributing to finding a cure that could help save the lives of others.
Have you joined a clinical trial? Share your story below in the comments!
Allie Schmidt is a rare disease advocate and disabled mom living with motor neuron disease. She founded Disability Dame in 2020 to provide tips to other moms living with disabilities and chronic illnesses.
In her spare time, you can find her traveling with her husband (she's been to 38 states and 16 countries!), watching reruns of Survivor, or tending to her near-constant sunburn from spending too much time outside. You can follow her adventures here.