Stand Up and Be Counted

We’ve all had those moments in life where we ask ourselves, “Should I get involved?” At such times — whether it’s a family matter, a disagreement at work, or a broader advocacy issue — we consider whether our involvement can make a positive difference and whether the effort is worth our time.

We are in such a time, and the answer to these questions is yes.

Within the first 100 days of the second Trump presidency, we witnessed mass layoffs at science- and health-related government agencies, cuts to federal training programs for young researchers, and the introduction of ideological restrictions on federal grants for research. It is abundantly clear that scientific research is in grave peril, and patients, including those with blood diseases, stand to pay the price down the road. These things matter, and we cannot be silent.

Any presidential administration has the right to restructure federal agencies and set priorities. (At the same time, let’s not forget the role of Congress in first creating agencies and then funding them.) No matter what is done and by whom, we want thoughtful reform with input from stakeholders that supports further advances in hematology and patient care. Unfortunately, there is little evidence that is happening now.

For example, the thousands of layoffs announced at the U.S. Department of Health and Human Services (HHS) — which includes the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Food and Drug Administration (FDA) — could derail biomedical and public health research in blood diseases. Remember that NIH had supported groundbreaking research that led to FDA approval of the first gene therapy for sickle cell disease and more effective treatments for blood cancers, including innovative CAR T-cell therapy. Today, we face the grim reality that almost the entire staff of CDC’s Division of Blood Disorders and Public Health Genomics has been placed on administrative leave due to the cuts at HHS. (ASH sent a letter to HHS Secretary Robert F. Kennedy Jr., calling for restoration of the division.) Meanwhile at NIH, the chiefs of at least four of the main institutes and centers that make up the agency are among the more than 1,200 scientists and other personnel who lost their jobs in the cuts announced at the end of March. Areas of affected research include SCD.

Separately, deep cuts to Medicaid appear to be virtually certain if budget plans move forward as is. Such cuts would undermine access to health care for a swath of patients.

The situation changes almost daily, and there have been instances where potentially damaging decisions are rescinded. That’s all the more reason for us to speak out.

What is ASH doing in response to this tsunami of federal action?

• With letters, phone calls, and visits to Capitol Hill, the Society is advocating on behalf of hematologists as President Trump issues executive orders and Congress works on its spending bills, which include federal research funding.

• ASH has been collecting the stories of its members to highlight how recent executive orders affect research, the delivery of health care, and, most especially, patients with hematologic conditions.

• ASH is working in conjunction with other organizations, including the Council of Medical Specialty Societies and the Coalition for Health Funding, to sound the alarm about the mass layoffs and dismantling of essential programs at HHS.

• ASH is developing toolkits to provide guidance on points to share at town hall events and in correspondence and/or meetings with lawmakers in congressional districts.

To learn more about the above actions and others, and to learn how you can help, please scan the QR code below to visit the Action Hub that ASH has created to highlight the #Fight4Hematology. Your voices and participation are critical to our success.

As we move forward, recognize that what worked in the past may not work today. We’re not going to turn the tide by having the same conversations with the same people. We are dealing with an entirely new (and unsettling) dynamic. We must sharpen our message and engage new stakeholders in our discussions. We must make our case as never before in articulating the need for rigorous and sustained hematology research and support of science.

Consider the power of patient stories as we engage with leaders. It’s one thing to talk in general about the value of research. It’s another thing to hear from a patient who is benefiting from a new therapy or, conversely, from patients who are waiting for that next breakthrough to ease their suffering.

ASH is rising to this challenge, and we need your help. Don’t wait for somebody else to write that letter to the editor, call a member of Congress, contribute to a social media discussion, or speak out at a town hall meeting. Make the most of your personal connections. Do you have a neighbor, family member, or former colleague who is in a position of leadership and/or can influence policy? One-on-one conversations about the real impact of these decisions can make a difference.

Let’s all be that person who’s going to stand up and fight for science, fight for research, fight for hematology, and fight for our patients. If not us, then who? If not now, then when?