Health Care Roundup: 'Misleading' Pre-Existing Conditions Bill; Clinical Trials Lack Black Patients; 'Cancer Coaching' Ethics; Young Adult Cancer Advocates - NCCS - National Coalition for Cancer Survivorship

In order to bring you the latest cancer-related health care policy and news, we at NCCS combined our ACA Updates and What Caught Our Eye (WCOE) content into a weekly email and blog post. We aim to make this a concise, one-stop summary of what you need to know as we continue working together to make cancer care better for everyone.

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HEALTH CARE HIGHLIGHT

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 Coverage for Patients with Pre-Existing Conditions Act” (S.3388), is misleading and, if passed, would not provide adequate coverage for those covered under current law with pre-existing conditions.

The reason is that while the bill requires insurers to provide health care plans to people regardless of health, it does not require the insurers to cover the costs of the care for the pre-existing condition itself.

NCCS and others stated in the letter:

We share your interest in continuing to make health insurance accessible to Americans with pre-existing conditions and appreciate your efforts to preserve certain protections in law, regardless of the outcome of Texas vs. US. However, the “Ensuring Coverage for Patients with Pre-Existing Conditions Act” as currently drafted, falls far short of providing coverage and security to your constituents.

The bill is seen by many as an attempt to calm fears related to the Texas lawsuit challenging the constitutionality of the ACA. If that lawsuit is eventually successful, it would wipe out the pre-existing condition protections millions of Americans have come to rely on.

Read the full letter »

CHART OF THE WEEK

The ACA’s Pre-Existing Condition Protections Remain Popular with the Public, including Republicans, As Legal Challenge Looms This Week

Kaiser Family Foundation

As there are several pending lawsuits that aim to either attack or protect the ACA, we thought it was important to share this chart again by KFF that shows how important pre-existing condition protections are for the vast majority of Americans.

IMPORTANT READS

Key Flaws of Short-Term Health Plans Pose Risks to Consumers

Via Center on Budget and Policy Priorities

On October 2, federal rules take effect that will fundamentally change how short-term health plans are administered. This article serves as another reminder of why these changes are so concerning, namely:

In most states, short-term plans are exempt from pre-existing condition protections and benefit standards that individual-market plans must meet.

Denied ‘life-extending opportunities’: Black patients are being left out of clinical trials amid wave of new cancer therapies

Via STAT News

This report provides compelling evidence that clinical trials continue to have meaningful racial disparities. It specifically looks at a clinical trial for a new drug for multiple myeloma, where one out of five people diagnosed in the US are African-American. In the trial however, only 1.8 percent of participants were African-American.

The racial disparity in the Ninlaro study isn’t unusual. Reflecting the reluctance of the FDA to force drug makers to enroll more minority patients, and the failure of most manufacturers to do so voluntarily, stark underrepresentation of African-Americans is widespread in clinical trials for cancer drugs, even when the type of cancer disproportionately affects them. A ProPublica analysis of data recently made public by the FDA found that in trials for 24 of the 31 cancer drugs approved since 2015, fewer than 5 percent of the patients were black. African-Americans make up 13.4 percent of the U.S. population.

Cancer Coaches Help Guide Patients During and After Treatment

Via Wall Street Journal

This article highlights the increasing use of “cancer coaches” to help guide patients through a cancer experience. While it is helpful that patients have somewhere to turn for additional assistance, it raises serious ethical concerns that only patients with financial means can afford this level of care.

Young Adult Cancer Action Day: Advocating for Young Adult Survivors

Via The Bloodline With LLS (Podcast)

An informative interview with Kate Houghton, of Critical Mass, about the “Deferment for Active Cancer Treatment Act” (H.R. 2976). This bill “calls for federal student loan borrowers to be eligible for deferment while they are receiving treatment for cancer.”

https://canceradvocacy.org/blog/health-care-roundup-sept-14-2018/
https://canceradvocacy.org/blog/health-care-roundup-sept-7-2018/