Precision Medicine: What to Expect and How to Advocate for Yourself

Check out “Your Guide to Precision and Personalized Medicine for Rheumatoid Arthritis” for more information on this topic. 

Managing a condition like rheumatoid arthritis typically involves a long stream of trial and error when it comes to medications. However, there may be a way for you to more quickly find a solution with your doctor. 

Historically, physicians have had to use a one-size-fits-all approach for medication by basing their recommendations on the “average” patient. On the other hand, by using the emerging field of precision medicine, they can take into account what’s unique about your specific genes, environment, and lifestyle, per the National Institutes of Health (NIH).  

“The concept of precision medicine has evolved because of the plethora of therapeutics we now have,” says Harris Perlman, PhD, Chief of Rheumatology at Northwestern University Feinberg School of Medicine. “We have multiple choices, but the problem is that there is trial and error — and we don’t know which patient should get which therapeutic.” 

Precision medicine may sound like something out of a futuristic sci-fi film, but millions have already been impacted by it, per the NIH.   

One tool in the rheumatoid arthritis space is PrismRA, a blood test that helps you and your doctor find the right medication sooner. When patients with moderate to severely active disease were prescribed treatment based on their PrismRA result, they saw clinical improvements that were three times higher than those whose treatment didn’t align with test results, per a 2021 study in the journal Expert Review of Molecular Diagnostics funded by Scipher Medicine Corporation (the manufacturer of PrismRA). 

Another available precision medicine tool is Vectra, which measures your rheumatoid arthritis and inflammation and predicts your risk of radiographic progression by measuring 12 biomarkers — and incorporating that information with data on your age, gender, and more.  

Here’s what to know about precision medicine — and how to talk to your doctor about getting tested.  

When might my doctor recommend precision medicine?

Your doctor may consider factors such as where your arthritis presents or if you have additional symptoms like nodules or deposits under the skin when considering how to advance your course of treatment.  

It can take your doctor three to six months to determine if a certain treatment strategy isn’t working, so eliminating certain drugs from the get-go can be helpful in lowering the amount of time you have active disease.  

“Having a test like PrismRA allows us to say which is the best drug not to start with,” says Grace Wright, MD, a consultant rheumatologist in New York City and President of the Association of Women in Rheumatology. “The typical strategy is that everybody who goes on advanced therapy starts up with a TNF blocker. But for some patients, that’s not the right start.” 

PrismRA is typically recommended for people who have not been on a biologic treatment yet. Let’s say, for example, that methotrexate (a DMARD) isn’t working for you and your doctor is considering an escalation to a biologic treatment. PrismRA would help inform the next potential treatment decision.  

However, keep in mind that not all doctors are familiar with precision medicine yet. Even though about half of participants who use precision medicine found it useful, only 2.6 percent of total participants reported their doctor using it to find a treatment that may work better for managing their rheumatoid arthritis, per a Global Healthy Living Foundation survey.  

Doctors who are familiar with the field may also recommend precision medicine based on ultrasound guided synovial biopsies, which is another method of learning more about the mechanisms of your disease. It involves taking tissue samples from the lining of your joint for analysis.   

“All the centers that I know working on precision medicine and rheumatology are looking for individuals who want to be eligible for precision medicine,” says Dr. Perlman, who is personally involved in studies that perform synovial biopsies. “We’re looking for people who are willing to undergo synovial biopsies. I think there are never enough patients for this.” 

In other words, by participating in precision medicine, you can also help contribute to the field of study that will benefit others.  

What is the process of precision medicine like?

When making an initial assessment for precision medicine in rheumatology, your doctor may use a combination of testing, molecular profiling, and other diagnostic assessments.   They’ll look at inflammatory markers in your blood, if you have certain markers for more severe disease, and imaging results like X-rays that could show evidence of bone erosion. If your doctor decides you’re a good candidate for a precision medicine test, they will order that for you — and combine the results of that test with these other factors.  

If your doctor orders PrismRA, for example, they will refer you to a phlebotomist to draw your blood. If you live in a remote area, you may also get a mobile phlebotomist sent to your house. The phlebotomist will draw three vials of blood to send to the company. As a patient, this will likely feel like a normal blood draw to you. The company will then process the sample and send the results to your doctor within seven to 10 business days. At that point, how long it takes for your doctor to analyze those results varies by provider. You may discuss the results at your next scheduled visit. 

“I was really impressed by how quickly the results came back — within just a week,” says Elaine Wiley, who has rheumatoid arthritis and scleroderma, and who took the PrismRA test.  

It’s a common misconception that precision medicine is very expensive, but your insurance may cover it for you. (For instance, PrismRA is covered by Medicare.) In general, most patients tested pay less than $75. If you may owe more than $75 for your test, Scipher will reach out to you to ask if you’d still like to have the test done and review financial options with you. Read about “7 Common Myths About Precision Medicine.”

“Although my insurance company did pay for it after an appeal, Scipher was very forthcoming about the cost,” says Elaine. “They were willing to talk with me about how much it was going to be and work with me on financial aid.” 

You can use this tool to find a provider who offers the PrismRA test.   

How do I interpret the results?

If you take a PrismRA test, your doctor will receive two main results noting if you’ll respond to a TNF inhibitor or not: 

TNFi results

• This shows whether a TNFi inadequate response is detected or not, along with a PrismRA score on a scale of 1 to 25 (the higher the score, the more likely you are to have an inadequate response to TNFi treatment).

Interpretation criteria

• This shows your probability of response to TNFi therapy.
• 18.5 or higher is a very high signal of inadequate response and shows you have a five percent chance of responding to TNFi.
• 10.6 or higher is a high signal of inadequate response and shows you have a 10 percent chance of responding to TNFi.
• Less than 10.6 shows that you don’t have a signal of inadequate response and may be likely to respond to TNFi (but keep in mind that a low score does not guarantee a positive response).

Remember, you won’t have to go at this alone. Your doctor is responsible for interpreting the results for you and guiding you toward the next best treatment. That said, you should still ask questions about the resulting treatment recommendations, because the test won’t know your full medical history like your doctor does.  

“The simplest question to ask is: ‘What should I start with and why do you think that’s the best drug for me?’” says Dr. Wright. “Even though the test may tell you that a drug class is best, the test doesn’t know if you have heart disease, diabetes, are prone to infections, have a history of cancer, and so forth.’”  

After your doctor chooses a new drug for you based on your test results, they’ll ask you several questions throughout your treatment course. These may include:  

• How are you feeling overall? 
• How many tender joints or swollen joints do you have?  
• Is it helping with your fatigue? 

“When we assess whether the drug is working, we look at things that we can measure, but we also have to measure things that people feel — whether it’s fatigue, depression, or ongoing stiffness,” says Dr. Wright. “Putting all of those together gives a measure of success for this particular drug.” 

A year shouldn’t pass by before you and your doctor have this assessment. Typically, these are done every three months (or more often, if your disease is very active and rapidly worsening). In between appointments, track your own symptoms so you can share the full picture with your doctor. 

Survey participants who have used precision medicine testing reported that it was useful for reducing trial and error when changing medications (41.4 percent), making them feel more confident in the medications they take (34.5 percent), helping them plan for the future (31 percent), and helping them feel better faster (27.6 percent), per the GHLF survey.  

“To me, it was incredibly useful because I would have kept trying TNF inhibitors without it,” says a patient interviewed by the Global Healthy Living Foundation who underwent precision medicine testing and had less than a 10 percent chance of responding to TNFi. “But I don’t think that my rheumatologist is mentioning it to anybody else. She’s very good, but I think this isn’t somehow in her wheelhouse.” 

For others, it provides much-needed reassurance. 

“As a patient, it’s so comforting to know that your autoimmune disease might stay in check with a given drug class,” says Elaine, who found out that she responds to TNF inhibitors through the Prism RA test. “You could live a potentially normal life, or as close to it as it looks, knowing that would work for you.” 

The bottom line: Precision medicine can be incredibly helpful in shortening the trial and error time in your rheumatoid arthritis treatment. However, it may require some self-advocacy. Bring it up to your doctor at your next appointment, ask questions, and work toward a better treatment option together.  

This article is part of “Your Guide to Precision and Personalized Medicine for Rheumatoid Arthritis” and was made possible with support from Scipher Medicine. 

Listen: Understanding Precision and Personalized Medicine for Rheumatoid Arthritis