Perspective

Nearly 60% of rheumatology patients struggle to afford treatment

Name

Although 90% of patients with rheumatic diseases have health insurance, 57.13% report struggling to afford their medication, with one-quarter paying more than $1,000 out of pocket each year for treatment, according to a survey from the American College of Rheumatology.

“These findings make clear that Americans living with rheumatic disease — regardless of age, gender or income level — struggle to find affordable care,” Paula Marchetta, MD, MBA, president of the ACR, said in a press release. “To address these challenges, it is

crucial for patients, clinicians and policymakers to work together to improve access to rheumatology care so that patients can live longer, healthier, and more fulfilling lives.”

The Rheumatic Disease Patient Survey was conducted from June 28 to 29, 2019, as part of the ACR’s Simple Tasks public awareness campaign. Conducted with the use of the SurveyMonkey online polling tool, it included a nationally representative sample of 1,517 adults living with rheumatic disease in the United States.

 
Nearly 60% of patients with rheumatic diseases struggle to afford their medication, with one-quarter paying more than $1,000 out of pocket each year for treatment, according to survey data.
Source: Adobe

Question topics included health care access, affordability and lifestyle. The survey follows the ACR’s 2018 Rheumatic Disease Report Card, which also examined access, affordability and lifestyle challenges among patients, and graded all 50 states and Washington, D.C., based on how well an individual with rheumatic diseases could live. Most states averaged a “C” grade in that report card. According to the ACR, the 2019 survey “provides additional context to these challenges by asking patients directly how their disease impacts daily life.”

According to the survey, although 57.41% of respondents reported being treated by a rheumatologist, 63.68% of those individuals had to wait more than 30 days after their referral before sitting down with a rheumatologist for an initial appointment. In addition, 46.49% those receiving treatment are forced into step therapy. Among the respondents, 6.24% reported out-of-pocket costs of more than $5,000 per year for treatment. Regarding quality of life, 63.81% of patients reported that their rheumatic disease hampered their ability to complete basic daily tasks such as eating, getting dressed, cooking and running errands.

“By providing additional context to the Rheumatic Disease Report Card, this survey contributes new insights into the unique access, affordability, and lifestyle challenges faced by these individuals,” the survey report concludes. “The challenges presented in this survey may be alleviated with appropriate legislative and regulatory reforms. It will be critical for patients, clinicians and policymakers to work together to improve access to rheumatology care, make it easier for patients to afford their prescribed treatments, and help patients with rheumatic diseases live longer, healthier and more fulfilling lives.” – by Jason Laday

Name

Although 90% of patients with rheumatic diseases have health insurance, 57.13% report struggling to afford their medication, with one-quarter paying more than $1,000 out of pocket each year for treatment, according to a survey from the American College of Rheumatology.

“These findings make clear that Americans living with rheumatic disease — regardless of age, gender or income level — struggle to find affordable care,” Paula Marchetta, MD, MBA, president of the ACR, said in a press release. “To address these challenges, it is

crucial for patients, clinicians and policymakers to work together to improve access to rheumatology care so that patients can live longer, healthier, and more fulfilling lives.”

The Rheumatic Disease Patient Survey was conducted from June 28 to 29, 2019, as part of the ACR’s Simple Tasks public awareness campaign. Conducted with the use of the SurveyMonkey online polling tool, it included a nationally representative sample of 1,517 adults living with rheumatic disease in the United States.

 
Nearly 60% of patients with rheumatic diseases struggle to afford their medication, with one-quarter paying more than $1,000 out of pocket each year for treatment, according to survey data.
Source: Adobe

Question topics included health care access, affordability and lifestyle. The survey follows the ACR’s 2018 Rheumatic Disease Report Card, which also examined access, affordability and lifestyle challenges among patients, and graded all 50 states and Washington, D.C., based on how well an individual with rheumatic diseases could live. Most states averaged a “C” grade in that report card. According to the ACR, the 2019 survey “provides additional context to these challenges by asking patients directly how their disease impacts daily life.”

According to the survey, although 57.41% of respondents reported being treated by a rheumatologist, 63.68% of those individuals had to wait more than 30 days after their referral before sitting down with a rheumatologist for an initial appointment. In addition, 46.49% those receiving treatment are forced into step therapy. Among the respondents, 6.24% reported out-of-pocket costs of more than $5,000 per year for treatment. Regarding quality of life, 63.81% of patients reported that their rheumatic disease hampered their ability to complete basic daily tasks such as eating, getting dressed, cooking and running errands.

“By providing additional context to the Rheumatic Disease Report Card, this survey contributes new insights into the unique access, affordability, and lifestyle challenges faced by these individuals,” the survey report concludes. “The challenges presented in this survey may be alleviated with appropriate legislative and regulatory reforms. It will be critical for patients, clinicians and policymakers to work together to improve access to rheumatology care, make it easier for patients to afford their prescribed treatments, and help patients with rheumatic diseases live longer, healthier and more fulfilling lives.” – by Jason Laday

    Perspective
    Linda Grinnell-Merrick

    Linda Grinnell-Merrick

    This patient survey so accurately depicts what we see in our daily practices. I was anxious to review the findings and certainly was not surprised by the results.

    We witness patients struggling to afford their medications, even when utilizing insurance and copays. Their cost per month for multiple medications can be exorbitant along with the additional expense of office visits and testing, so patients are frequently not taking their medications as prescribed due to cost and rather than non-compliance. Many patients are embarrassed to share this with their providers and, as a result, patients may be lost to follow-up or miss multiple appointments because they are not taking their medications as prescribed or not taking them at all.

    Step therapy is another issue that impacts the quality of care that we as providers want for our patients. Unfortunately, the reality is that many are not receiving the medications their providers recommend for them. After spending time reassuring patients about our recommendations for treatment, we frequently have to call them up and tell them their insurance wants them to instead try and fail other medications first. How disheartening this is for our patients.

    I wonder how out-of-pocket cost and issues with step therapy may be directly affecting the quality of life that patients are experiencing. Is the negative impact on quality of life related to not receiving or delaying recommended therapies? Is taking medications differently than how they are prescribed due to cost affecting quality of life? It seems these could be contributing factors and certainly something worth investigating.

    The workforce shortage is yet another daily reality in our practices. Thankfully, several organizations are developing programs to help alleviate this crisis, but this will take time. I look forward to more of these patient surveys. As health care practitioners in rheumatology, we know what the issues are, but it is good to be reminded that their impact is felt greatest by the patients we serve.


    • Linda Grinnell-Merrick, MS, NP-BC
    • Nurse Practitioner
      University of Rochester Medical Center
      Immediate past president
      Rheumatology Nurses Society

    Disclosures: Grinnell-Merrick reports being on the speakers’ bureau at AbbVie, Celgene, Janssen, and Novartis, and consulting for Lilly and Sanofi.