News & Events
Voices of Hodgkin’s Blog
Voices of Hodgkin’s Blog
Lack of Insurance Could Mean Later Cancer Diagnoses for Black, Hispanic Americans
Health Day News –

According to this new study, “Being uninsured accounts for a significant proportion of racial and ethnic disparities in cancers that are only detected at a later, more life-threatening stage.” This expansive study, led by the American Cancer Society, used data from roughly 1.9 million patients diagnosed between 2013 and 2019. The findings were published in the Journal of the National Cancer Institute.

Susie Leigh – Founding a Movement, Shaping the Future
National Coalition for Cancer Survivorship –

A Vietnam veteran, an oncology nurse, a four-time cancer survivor, and one of the founding members of the National Coalition for Cancer Survivorship (NCCS), Susie Leigh is not just a cancer survivor; she is a pioneer in the cancer survivorship movement.

Patients First: Samantha & Samuel Siegel’s Marriage of Medicine and Advocacy
National Coalition for Cancer Survivorship –

I “met” Samantha Siegel, fellow Hodgkin’s survivor via Zoom last year and knew immediately that she was a true kindred spirit. “Sam” is a fierce advocate for cancer survivors. She brings both a personal and a professional perspective to the world of advocacy, with the added “plus” that her husband, Samuel, is also a survivor and a physician. I was lucky to meet both Samuel and Samantha in person in late June at the National Coalition For Cancer Survivorship’s CPAT meeting where they shared their amazing story.

National Standards For Cancer Survivorship Care
NIH –

Comprehensive, quality care for cancer survivors has been an elusive dream for many. It is well-recognized in the U.S. that we could be doing a MUCH better job of caring for survivors. Cancer survivorship programs have been haphazard at best and non-existent for too many people who are in desperate need of help. NCI has put forth a well-thought-out document with suggested standards of care. Questions remain regarding its enforceability, and there are still gaps in the services and research that would affect long-term survivors,

In The US, Cancer Survivors Form A Vocal Community. In Switzerland, Some Patients Want To Change A Culture of Silence.
NZZ (New Journal of Zurich) –

In the U.S., cancer patients must often be their own health care advocates. This has helped create a community of cancer survivors that offers the long-term support Swiss patients lack. A visit with doctors, activists and patients in Chicago and Bern.

National Standards for Cancer Survivorship Care
National Cancer Institute –

This long-awaited, important document was published just this week. It represents the input of key stakeholders in cancer survivorship and was developed over the course of many months. While the proposed standards are not mandatory, it is, at the very least, a significant attempt to put us on a course of providing optimal care for ALL cancer survivors.

Survivor Views: Majority of Cancer Patients & Survivors Have or Expect to Have Medical Debt
American Cancer Society –

There are some startling statistics presented in this research article from the American Cancer Society – most notably, that nearly 50% of cancer survivors who were studied had or expected to face significant financial debt due to their cancer and cancer treatment, while, at the same time, almost ALL of those same survivors had insurance. What is wrong with this picture you ask? Plenty.

What Does it Take to Harmonize the World’s Hodgkin Lymphoma Data?
Blood Cancers Today –

In the first episode of The HemOnc Pulse in 2024, the lead researchers of the Hodgkin Lymphoma International Study for Individual Care (HoLISTIC) consortium discuss the immense labor and fortitude it took to successfully launch the consortium, which includes a global team of diverse experts focused on the prognosis, epidemiology, treatment, survivorship, and health outcomes in patients with Hodgkin lymphoma.

I’m a ‘Syringe Half-Full’ Kinda Girl
The Irish Times –

Meet Sheilagh Foley, a Hodgkin’s survivor with a familiar tale to tell, and she does it so beautifully. Hodgkin’s International was mentioned as a resource, and we are thrilled to have the “shout out!”

The Rise of the Expert Patient in Cancer: From Backseat Passenger to Co-Navigator
American Society of Clinical Oncology Journal –

Long-term survivors have been using the internet to understand their Late Effects for years. The value of self-advocacy is highlighted in this article.