Leading Bleeding Disorders Advocacy Organizations File Hemophilia Discrimination Complaint Against Wellmark Blue Cross and Blue Shield

Advocacy News
– Complaint argues Wellmark’s withdrawal from the Iowa marketplace discriminates against protected health conditions under the ACA, including hemophilia, and its disclosure of a patient’s personal health information violates HIPAA
WASHINGTON, Aug. 15, 2017 /PRNewswire-USNewswire/ – The National Hemophilia Foundation (NHF), Hemophilia Federation of America (HFA), and Hemophilia of Iowa (HOI) filed a complaint today with the Office for Civil Rights at the U.S. Department of Health and Human Services (HHS) requesting that federal action be taken to end an Iowa insurer’s discrimination against people with hemophilia. The complaint alleges Wellmark Inc. violated provisions of the Affordable Care Act (ACA) and effectively prevented hemophilia patients from accessing care when it carved certain counties in Iowa out of their ACA plans and then pulled out of the Iowa marketplace entirely. The complaint further alleges Wellmark violated the Health Insurance Portability and Accountability Act of 1996 (HIPAA) when it publicly stated it was providing health insurance coverage to a 17-year-old male with hemophilia at a cost of $1 million per month.

Hemophilia is a rare inheritable bleeding disorder that: prevents the blood from clotting normally; can result in extended bleeding after injury, surgery or trauma; and can be fatal if not treated effectively. The Centers for Disease Control and Prevention estimates 20,000 Americans have hemophilia.1

“Prior to the Affordable Care Act, health insurance companies routinely denied coverage to people living with pre-existing conditions, and imposed annual and lifetime caps on benefits, which disproportionately affected people living with chronic lifetime diseases,” said Val D. Bias, CEO, NHF. “The ACA makes these discriminatory practices illegal, so it is unconscionable for an insurer like Wellmark to deny coverage to individuals with significant health needs, including people living with hemophilia. That is why we and our advocacy partners filed this complaint on behalf of the bleeding disorders community and, in essence, all individuals living with chronic health conditions.”
A history of discrimination by Wellmark
The complaint maintains that Wellmark Inc., an insurer that offered Qualified Health Plans (QHPs) in Iowa through 2017, “has a long history of discriminating against and intimidating those with hemophilia” and “has gone to extreme lengths to avoid covering hemophilia claims.”
Wellmark’s latest and most punitive action occurred on April 3, 2017 when it announced it would not sell or renew ACA plans in Iowa effective January 1, 2018. The company’s official statement regarding their withdrawal noted a loss of approximately $90 million in the marketplace since 2014 and continued uncertainty over the future of the ACA. However, on March 30, 2017, a senior Wellmark executive gave a public speech citing coverage of a 17-year-old male with hemophilia that cost the company $1 million per month as a motivating factor.
The complaint charges that given the rare nature of hemophilia and the relatively low population of Iowa, this public disclosure, done without the patient’s consent, was a clear violation of patient privacy protections in HIPPA. The complaint further alleges that this revelation was made for the purpose of justifying their withdrawal from the marketplace. The patient’s information was also widely disseminated in local, national and online media coverage, much of which featured commentary by a healthcare policy researcher – “Everyone is trying to avoid the $12 million-man because whoever catches him basically can’t make money” – that could have an impact on coverage options not only for people with hemophilia, but also individuals living with other chronic lifetime diseases.2
“Wellmark’s wrongful disclosure of the patient’s condition and costs, and its decision not to sell policies to individuals with hemophilia, has resulted in other insurers withdrawing from the Iowa marketplace,” said Kimberly Haugstad, President & CEO, HFA. “In fact, Iowans seeking health insurance in Iowa’s marketplace now have only one insurer from which to choose, Medica, which announced it would raise premiums an average of nearly 45 percent to afford the risk it will incur. This increase will make coverage financially prohibitive for many people, which is directly attributable to Wellmark’s wrongful disclosure of patient information. We therefore are asking HHS to take all necessary steps to remedy Wellmark’s unlawful conduct.”
Requested action by the federal government
The complaint, filed pursuant to the ACA’s nondiscrimination provision and on behalf of NHF, HFA and HOI, requests the Office for Civil Rights at HHS: review the basis for Wellmark’s decision to withdraw from the Iowa marketplace and take steps to remedy the company’s actions; review Wellmark’s public disclosure of patients’ health information; and seek civil monetary penalties from the insurer for noncompliance with federal civil rights protections.
About NHF
NHF (the National Hemophilia Foundation) is a 501(c)(3) nonprofit organization dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, NHF has 54 chapters throughout the United States. Additional information on NHF and bleeding disorders can be found at www.hemophilia.org/. To locate an NHF chapter near you, visit  https://www.hemophilia.org/Community-Resources/Chapter-Directory.
About Hemophilia Federation of America
Hemophilia Federation of America (HFA) was formed in 1994 as a place of education and support for bleeding disorders families. HFA is a national nonprofit that assists and advocates for the bleeding disorders community and is comprised of 44 Member Organizations across the country, including Hemophilia of Iowa. Our vision is to remove barriers to choice of treatment and to improve the care and quality of life for all people with bleeding disorders.
About Hemophilia of Iowa
Hemophilia of Iowa’s mission is to provide education and support for people with bleeding disorders and their family and friends. Their goal is to assist anyone in Iowa affected with a blood coagulation disorder to become healthier and more self-sufficient.
1 Centers for Disease Control and Prevention, Hemophilia Data & Statistics, https://www.cdc.gov/ncbddd/hemophilia/data.html. Accessed July 27, 2017.
2 Tony Leys, Iowa teen’s $1 million-per-month illness is no longer a secret, The Des Moines Register, May 31, 2017, http://www.desmoinesregister.com/story/news/health/2017/05/31/hemophilia-patient-costing-iowa-insurer-1-million-per-month/356179001/. Accessed July 27, 2017.
SOURCE National Hemophilia Foundation; Hemophilia Federation of America