2/3/2020 by Share Your Story

ASH2019: Improving Patient Access to Appropriate Care

Highlights from the American Society of Hematology conference of 2019 that feature improving patient access to care and innovation.


ASH2019: Improving Patient Access to Appropriate Care

The annual meeting of the American Society of Hematology (ASH) presents research-advances in malignant and non-malignant blood disorders. Improving patient access to care was an important theme at ASH2019.


Easing Restrictions of Clinical Trial Eligibility Criteria

Several studies for blood cancer patients were presented at the ASH annual meeting that highlighted barriers to access of innovative, timely treatment options.

  • Children from poorer neighborhoods were 2.4-times more likely to die while on treatment for acute myeloid leukemia (AML) than children from middle- or high-income neighborhoods. This from a study that analyzed outcomes of over 1,500 clinical trial (CT) participants from 2 AML trials. Five-year survival following diagnosis was:
    • 68% among participants from middle- and high-income neighborhoods
    • 61% for patients from low-income neighborhoods
    • 43% for patients living in poverty
  • Eligibility criteria for AML trials may include an unnecessary bias that can exclude minorities from participating in the trial. A study of over 1,000 AML patients found that when clinical trials exclude people with comorbidities they may disproportionately exclude African American patients who have a higher rate of abnormal creatinine levels (a parameter for kidney function). However, review of medical records found treatments were equivalent in White and African American AML patients survival information.
  • Another study evaluated age-related barriers in multiple myeloma treatment. Concerns about the ability of older patients to bear aggressive treatment usually restricts older patients from participating in trials that evaluate hematopoietic stem cell But researchers found stem cell transplants were safe and effective in patients over 70 years of age, underscoring the argument against age-based exclusion from CTs and improving patient access to treatment options.

Recommendations for Reducing Unnecessary Tests and Procedures in Pediatric Patients

ASH and the American Society of Pediatric Hematology/Oncology have released a list of recommendations to reduce unnecessary testing in pediatric patients. Parents of young patients can utilize this when discussing their child’s treatment plan with their care provider:

  • Don’t perform routine pre-operative hemostatic testing in a healthy child if there is no personal or family history of bleeding.
  • Non-bleeding patients with a platelet count >10,000/mcl do not need a platelet transfusion unless there are other signs of bleeding or the patient is to undergo an invasive procedure.
  • In the absence of a positive family history, children with venous access associated thrombosis should not undergo thrombophilia testing.
  • In children with iron deficiency anemia lacking signs of active hemodynamic instability, packed RBC transfusion is not recommended.
  • Granulocyte colony stimulating factor should not be routinely administered for empiric treatment of pediatric patients with asymptomatic autoimmune neutropenia in the absence of recurrent or severe bacterial and/or fungal infections.

Updates on Sickle Cell Disease

Over the years, ASH has placed significant focus on highlighting global progress in the care and treatment of patients with sickle cell disease (SCD). Several studies were presented this year as well, including the below:

  1. Oral arginine supplements in Nigerian children were able to reduce pain associated with vaso-occlusive crises, which is the result of obstruction caused by the sickle-shaped RBCs in SCD patients. The oral supplement not only reduced the need for pain medication in these children, it also reduced pain-related hospitalizations. This is particularly relevant for resource-constrained populations. According to the Centers for Disease Control and Prevention, SCD occurs among 1 in 365 African American births. Previous study confirmed the efficiency of arginine in reducing pain in hospitalized US children which reduced opioid use.
  2. A study by researchers at the University of California Davis School of Medicine found that young adults with SCD were admitted to multiple care facilities (rather than the same one repeatedly) resulting in fragmented medical care, ultimately affecting their clinical outcomes.

During the meeting, the Society also released updated SCD guidelines that can be useful for patients and healthcare providers alike as they make decisions on screening, diagnosis and management of cardiopulmonary and renal complications associated with SCD.


Connecting Patients to the Right Clinical Trials

In partnership with the Leukemia & Lymphoma Society (LLS), ASH will now be able to provide free clinical trial navigation and support that will help match patients with blood cancer to suitable trials, which can be a big relief for both patients and their families. This service can help bridge obstacles that arise from geographic barriers, eligibility or simply lack of knowledge. “We are very excited that ASH clinicians and their patients will have direct access to our nurse navigators, freeing up the doctors to focus on patient care,” said Gwen Nichols, MD, chief Medical Officer of LLS.

With this collaboration, the patient’s doctor (ASH membership required) works with nurse navigators at LLS’ Clinical Trial Support Center (CTSC). They can personalize the search for a trial to fit the patient’s needs while improving patient access to innovative treatments. Additionally, patients and their families will have access to educational materials and other resources during the clinical trial.


Additional Useful Resources

U.S. government website with information on global clinical trials: https://clinicaltrials.gov/.

More on cancer clinical trial eligibility criteria: https://www.cancer.gov/news-events/cancer-currents-blog/2019/expanding-clinical-trial-eligibility-criteria.

A Patients Rising University article featuring the Seven Things You Need To Know about Sickle Cell Disease.

Patients Rising University acknowledges the important contributions of Surabhi Dangi Ph.D. in this article. Improving patient access is our mission and we’re happy to utilize a variety of experts to carry that out.


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