CAR T Cell Therapy: What It Is and What Patients Think About It

As advancements in medical treatments continue to evolve, CAR T cell therapy is emerging as a promising option for individuals with autoimmune diseases like lupus. 

What Is CAR T Cell Therapy?

CAR T cell therapy is a type of immunotherapy being used to treat some cancers. CAR T therapy involves removing cells from your blood, genetically modifying them, and then returning those cells to your blood to treat a disease. It’s a treatment or series of treatments you do once and then you don’t do it again. 

How Does CAR T Cell Therapy Work?

In a nutshell, here’s how CAR T cell therapy works: 

• Collect T Cells: T cells are a type of immune cell in your body that can fight infections. Doctors take some of these cells from your blood through a process called leukapheresis. This is where blood is circulated through a machine to remove T cells and then the blood is returned to the body. 
• Modify T Cells: In a lab, scientists change these T cells by adding a special receptor to them. This receptor is called a Chimeric Antigen Receptor (CAR). The CAR acts like a guide, helping T cells recognize and attack the inflammation in your body. 
• Grow More T Cells: The modified T cells are then grown in large numbers in the lab. 
• Infuse T Cells Back: The newly modified and multiplied T cells are put back into your body through an infusion. Prior to this, you will take certain medications to prep your body so it accepts these new T Cells. 
• Attack inflammation: Once inside, these CAR T cells can find and destroy malfunctioning immune cells more effectively. 

CAR T therapy is being evaluated for its safety and tolerability in treating other conditions, including autoimmune diseases like lupus, myositis, and sclerosis. Just as T cells can be taught to attack cancerous cells, they may also be taught to attack malfunctioning immune cells. Researchers believe that, when used to address autoimmune diseases, CAR T cell therapy may help the body destroy malfunctioning immune cells and potentially lead to improvement or remission. 

Given CAR T’s potential as a possible treatment for lupus as well as the numerous myths surrounding clinical trials, we sought to better understand the perspectives of individuals living with chronic illnesses. To do so, the Global Healthy Living Foundation conducted a poll with our patient community to learn about their knowledge of CAR T, and their likelihood of trying it. 

Patient Perspectives on CAR T Cell Therapy

Of the 1,313 respondents, 77 percent reported never having heard of CAR T cell therapy (18 percent had and 5 percent were unsure).  

We then asked specifically if participants have heard that CAR T cell therapy might be useful for treating some autoimmune diseases, including lupus, myositis, and multiple sclerosis. Not surprisingly, given the response above, 82 percent reported no.  

Interestingly, about half (52 percent) reported extremely likely or likely to consider trying CAR T cell therapy if it were available as a treatment option for their conditions.  

Other answers included: 

• 36% not sure/not enough information 
• 7% neither likely nor unlikely  
• 3% unlikely 
• 2% extremely unlikely  
• <1% I have been treated with CAR T cell therapy for cancer 

In the free response section of the poll, we learned more about why people might be likely or unlikely to have this treatment if available.  

The responses highlighted four main themes:  

• Potential improvement of quality of life 
• Need for more information 
• Appreciation for the “once and done” aspect of the treatment 
• The possibility of reducing reliance on drugs 

Improvement of Quality of Life Is Top Consideration

A significant number of respondents expressed a strong desire for any treatment that could enhance their quality of life. For people with chronic illness, the potential to alleviate symptoms and regain a sense of normalcy is a powerful motivator. 

• “Anything to improve my quality of life.”    
• “Arthritis is disabling, and this might improve my quality of life.”  
• “Because it would mean a better quality of life.”  
• “As long as it’s covered by insurance, I would gladly try it so that I could have a better quality of life.”  
• “I am always interested in reducing the impact of my disease and improving the quality of my daily live.” 

More Information Is Needed

While many are hopeful, there is also a clear call for more comprehensive information about CAR T cell therapy. People with chronic illness are cautiously optimistic, wanting to understand the long-term efficacy and safety of this treatment before trying it. 

• “Would want more long-term evidence.”   
• “Would want to know risk vs benefit analysis for my individual situation, particularly with this being a new type of treatment style.”   
• “Would want to see the safety profile.”   
• “Would want to weigh the risks against the potential benefits.”   
• “Would need to know much more about the procedure and any complications.” 

Appreciation for the “Once and Done” Aspect of CAR T

One of the most appealing aspects of CAR T cell therapy for many respondents is its potential as a “once and done” treatment. This regiment is a sharp contrast to the typical chronic illness treatments that require regular administration with no end in sight. 

• “Once and done.”   
• “Once and done sounds great.”   
• “Once sounds better than infusions every 28 days.”   
• “Once and done to be cured. Sounds too good to be true!”   
• “The one-and-doneness of the treatment is very enticing to me!”   

Reduces Reliance on Drugs

Similarly to the “once and done” sentiment, a significant theme was the desire to reduce reliance on traditional medications, which often come with a host of side effects. Many respondents have tried various drugs with limited success and significant side effects, and they view CAR T cell therapy as a potential escape from this cycle. 

• “To eliminate effects of my autoimmune disease and not to rely on drugs which cause many side effects.”   
• “Any treatment that would eliminate a lifetime of drugs is worth considering.”  
• “Have myositis and have tried so many drugs with side effects. Would be very excited for the opportunity to re-program my body to stop hurting itself.”  
• “I am so tired of being sick and not another medication can help me.” 

The Bottom Line

The responses from this quick poll reveal a blend of hope, caution, and eagerness among patients considering CAR T cell therapy for autoimmune diseases. The potential for improved quality of life, the allure of a “once and done” treatment, and the possibility of reducing dependence on traditional drugs are compelling motivators. However, the need for more education and personalized risk assessments remains crucial.  

With ongoing advancements in clinical trials and growing evidence, there is hope this therapy could change Clinical trials offer you the opportunity to be a part of evaluating potential new treatments and receiving extra support from your medical team. Plus, you’re helping researchers find better ways to treat other chronic illness warriors like you! 

Could You be Eligible for a CAR T Trial?

To learn more about CAR T clinical trials for lupus, click here. You will be asked to input information and go through a screening process to determine your eligibility. If you pass the pre-screener, you will be asked to choose a study site that is closest to you. Next, you will need to provide your name and contact information. This allows the research team at the site to reach out and set up an appointment to continue the screening process.   

About the Patient Support Program Quick Poll

We regularly poll our community who live with inflammatory arthritis and other chronic conditions, who live in the U.S. as well as around the globe, about how chronic illness and/or COVID-19 is affecting their lifestyle, mental health, chronic disease management, medication adherence, and more.   

We use this information to inform the educational resources we provide and to inform other stakeholders — such as public health experts, policymakers, advocacy groups, health care professionals, and pharmaceutical companies — about chronic illness patients’ needs and concerns. You can participate in ongoing poll by joining the support program here.  

This article was made possible with support from Bristol Myers Squibb.