
Advocating for Change: Ethan Schilling’s Path from Childhood Cancer to Survivor Advocate
Advocate Spotlight: Ethan Schilling A childhood cancer survivor himself, Ethan Schilling’s work as a psychologist is motivated by his commitment to meeting the psychological needs of children, adolescents, and families whose lives have been impacted by cancer and other chronic health conditions. Ethan’s personal experience with cancer started when his ...

Brett Wilson – Navigating Childhood Cancer and Finding Purpose in Advocacy
Advocate Spotlight: Brett Wilson Brett Wilson's cancer experience started when she was just two years old. Her mother was concerned because she was sleeping a lot, so she took her to the doctor. Diagnosed with Acute Lymphoblastic Leukemia (ALL), her family was told she had little chance of survival. Her ...

Championing Survivorship: Woody Brokenburr’s Lifelong Dedication to Cancer Advocacy
Woodrow “Woody” Brokenburr was diagnosed with cancer when he was 9 years old, after a biopsy revealed that the lump on his left thigh was osteosarcoma. In the 1960s, pediatric cancer care was challenging, even more so for Black children living in the racially segregated south, as access to quality ...

Alique Topalian: Childhood Cancer and the Frightening Realities of the Survivorship Journey
Alique was first diagnosed with Acute Myeloid Leukemia (AML) at the age of four. Her mother, Michele, knew something was wrong because “the light in her eyes was gone”. After being told by doctors that there was nothing wrong, her family was relentless until new blood work uncovered blast cells ...

Health Care Roundup: New Surprise Billing Proposal; When a Young Adult Has Cancer; Breakthrough Immune Cell Discovery; NCCS Project Webinar; More
NCCS joined with other patient groups in an amicus brief (a friend of the court brief) this week to challenge the administration’s October 2019 proclamation that would prevent immigrants from entering the U.S. if they cannot show they will be covered by approved health insurance within 30 days of entering ...

Health Care Roundup: Health Care Proposals Compared; ‘Surprise Billing’ Under Scrutiny; How Cancer Disrupts Young Adults’ Lives; Medicare Part D; More
Comparing Health Care Proposals – As Medicare-for-all and other public health care proposals continue to be released by Members of Congress, Kaiser Family Foundation created a great interactive summary which they update regularly to compare these plans. Most recently, Senator and presidential candidate Bernie Sanders introduced his Medicare-for-all bill in ...

NCCS Webinar Video: “The Outlook for Health Care in the New Congress”
Health care was the number one issue for a majority of voters in the 2018 midterm elections. With the House majority changing hands and a split Congress, in this webinar we discuss election implications on health care and what to expect in the new Congress. We also provide an overview ...

House Votes to Intervene in ACA Lawsuit; Drug Pricing News; Colon Cancer Rates Rising in Young Adults; More
This week, the House of Representatives voted to formally intervene in Texas v. United States, the lawsuit seeking to invalidate the Affordable Care Act (ACA). With support from three Republican members, it passed by a vote of 235-192. The resolution now heads to the Senate where Republican leaders will likely ...

Health Care Roundup: Drug Pricing in TV Ads; Even with Insurance, Serious Illness Can Mean Financial Distress; Fertility in Young Survivors; More
HHS Proposes Rule Requiring Drug Pricing in TV Ads – On Monday, Department of Health and Human Services (HHS) Secretary Alex Azar announced that HHS introduced a proposed rule to require direct-to-consumer television advertisements for prescription drugs include pricing information. According to the proposed rule, drugs paid for by Medicare ...

Health Care Roundup: ‘Misleading’ Pre-Existing Conditions Bill; Clinical Trials Lack Black Patients; ‘Cancer Coaching’ Ethics; Young Adult Cancer Advocates
NCCS and 30+ Patient Orgs Raise Concerns Over Senate Pre-Ex Bill — This week, NCCS and more than 30 other patient advocacy organizations submitted a letter to Senator Tillis (R-NC) detailing why his bill does not go far enough in protecting pre-existing conditions despite his intentions. The bill title, “Ensuring ...