The Right to Health

The daily life of people living with chronic, incurable illnesses.

Mahatma Gandhi once said that “[i]t is health that is real wealth and not pieces of gold and silver.” People diagnosed with a chronic, incurable illness have neither.

When one ruminates about the experiences of people with maladies such as Amyotrophic Lateral Sclerosis (ALS), Chronic Kidney Disease (CKD), and Multiple Sclerosis (MS), one may not comprehend the details of the diseases and experiences of people within their communities dealing with them. While Christina Applegate has been very vocal about her MS journey in recent years, there is much more information that the general public should know about all of these diseases and the challenges they present.

The most life threatening illness amongst these is ALS, characterized by progressive muscle weakness and paralysis. Much is unknown about ALS including why veterans of the United States Armed Forces have an increased risk of developing the disorder.

The cost of treatment is paramount for many patients and their individual support systems. A motorized chair and speech devices are likely necessities to ensure an increased quality of life, which may or may not be covered under insurance and are certainly not available at any sort of discount for the uninsured.

Most ALS patients are given two to five years to live. Such patients include Graham Hibbert, a 38-year-old father of two young children, who visited a neurologist after losing coordination and experiencing slurred speech. After being diagnosed with ALS, he was facing down losing the ability to walk, talk, eat, and eventually even breathe.

Hibbert’s family and friends realized that the only way for him to see his children grow up was to travel to Bangkok to receive stem cell treatment that would prevent disease progression. Hibbert was able to make the journey to Bangkok, but only after his friends raised $25,000 on GoFundMe.

ALS is also ever-present in Los Angeles County with such cases as Jacqueline Marie Zbur, the late sister of recently elected Assemblymember Rick Chavez Zbur. “She had surgery for scoliosis and it was very painful. It was supposed to be a three to six month recovery and it took her eighteen months. Later on in her rehabilitation, one of her feet was falling asleep frequently. She thought that it had something to do with the spine surgery,” Zbur said.

“It was a typical progression of symptoms. She lost strength and the ability to move her limbs. She developed slurred speech and an inability to swallow pretty rapidly,” adds Zbur.

As her condition deteriorated, Zbur saw an opportunity to inspire her brother to help people in her position as he began to ponder a run for office. “One of the things that my sister made me promise was to help people with disabilities if I got elected. She was luckier than most people because many do not have savings and a family to support them. Some end up in tents on the streets or go straight to a nursing home which does not allow people to age with dignity,” Zbur said.

“We don’t have a cure to ALS and we don’t have treatments that are very effective right now. There is a new stem cell therapy that my sister started on in Korea. What it does is take out stem cells from an individual’s bone marrow. The cells are processed and injected back into the spinal column. My sister received several treatments and it seemed to be slowing down the progression of the disease, but COVID happened and we could not travel to Korea anymore. She stopped the treatment as it was and is still not available in the United States and her ALS progressed,” Zbur explained.

Photo Courtesy of the Zbur Family  

Jacqueline Marie Zbur with Assemblymember Zbur. Zbur passed away on September 3, 2020 after her three year battle with ALS.

In late 2021, the Accelerating Access to Critical Therapies for ALS Act had almost unanimous support in the US Congress. The bill allowed for money to go to researching treatments for ALS and financially supporting patients, allocating half a billion dollars over the course of five years. Congressman Brian Higgins, a cosponsor of the bill, continues to be optimistic that the legislation “provides hope for families and patients battling ALS that we are closer to finding a cure.” 

This legislation was created due in part to the work of Brian Wallach and his organization, I AM ALS. Wallach, who continues to fight the illness that took his ability to walk and faces diminishing odds on life expectancy, worked in the Obama Administration as well as on the former president’s 2008 presidential campaign. Wallach used his organizing experience towards the movement to cure ALS. Wallach believes that the “healthcare system is broken for those living with rare or terminal diseases” and, despite the fact that ALS was discovered in the 1860s, “…[there] has [been] no real progress towards either a cure or meaningful treatment.”

Photo Courtesy of I AM ALS

Brian Wallach and his wife, Sandra Abrevaya, with their former boss, Barack Obama.

Wallach’s recently released documentary, No Ordinary Campaign, documents Wallach and other patients’ struggle to help politicians understand the realities of 1 in 300 people who will receive an ALS diagnosis in their lifetime. 

CKD is a much more common condition with 1 in 7 adults having been diagnosed with the disease that is usually caused by diabetes or hypertension. The symptoms of CKD not only present themselves late in the course of the illness, but can also be mistaken for something less severe and less life-threatening. This combination allows for only 10% of people who need to be on dialysis actually receiving the treatment.

The process is largely misunderstood. The strain of having to commit to dialysis treatment for four hours a day for three days a week should not be downplayed, but the affair is much more nuanced. For example, the twelve hours can be fit into one’s schedule with a healthcare worker being able to visit patients’ residences.

Other than the physiological burden and time commitment, dialysis treatment tends to go much more smoothly than popular myths may describe. Dialysis is not painful and patients can live without restrictions for up to thirty years on dialysis with a lifestyle that still includes travel, work, and continuing education.

Uninsured dialysis patients can expect to pay from five hundred to ten thousand dollars per session. Without the treatments, one’s life is considerably confined.

Medicare (Medicaid in California) covers most costs of dialysis after someone has been on the treatment for approximately three months. The friends and families of patients as well as the people on dialysis themselves sometimes turn to GoFundMe to cover the initial costs and any additional expenses, as well as lost wages during the first three months of treatment.

There is an entire medical section of GoFundMe devoted to illnesses that also includes MS, a progressive autoimmune disease that almost a million Americans are living with. People with MS usually live seven years less than the average American. Though MS is incurable, the managing of flare-ups allows for an increased quality of life. Flare-ups, otherwise known as relapses, are unpredictable and the symptoms can range from vertigo to pain in one’s back or eyes.

Some of these GoFundMe beneficiaries include Tianna Seegers, a mother of six who needs to pay for transportation to and from the doctor as well as other expenses, and Jenn Petrucci, a mother of two battling chronic anxiety, constant fatigue, and mobility issues who is seeking stem cell therapy to lessen her symptoms at a cost of $20,000 – none of which is covered by Petrucci’s insurance.

Other than financial and physical suffering, Americans such as Petrucci and other people with ALS and MS who use a wheelchair find themselves in a country that is still not ADA compliant over thirty years after the Americans for Disabilities Act was signed into law. As recently as February of 2023, a City Council debate featuring Councilman Chris Hinds of the 10th District of Denver, who uses a wheelchair, took place on a stage that lacked any sort of ADA-compliant accessibility.

Expanding access to affordable treatments, earmarking resources for cures, and electing more physically disabled politicians will all move the United States closer to a country that does not allow people in desperate need of care to struggle in the fight to secure the medical resources they so desperately need.