Roskam Launches Campaign to Help Alzheimer’s Caregivers

Jun 18, 2015
Press Release
Alzheimer’s Association: “We applaud Rep. Roskam for spearheading this important initiative.”

WASHINGTON—Today, Congressman Peter Roskam (IL-06), a member of the Ways and Means Subcommittee on Health, launched a social media campaign to help Alzheimer’s caregivers who are told the 1996 Health Insurance Portability and Accountability Act (HIPAA) prevents them from obtaining the health information of loved ones struggling with the disease. The HIPAA Privacy Rule sets the national standard for how doctors can access, use, and share your personal health information. However, an increasing number of real-world applications of the law demonstrate that health care providers often misinterpret HIPAA, causing access issues for caregivers. All Sixth District Alzheimer's caregivers are encouraged to visit www.roskam.house.gov/alzstory to confidentially share their experience encountering HIPAA with Congressman Roskam.

“Caring for a loved one with Alzheimer’s is a 24/7 job that carries a heavy emotional and financial burden,” said Congressman Roskam. “As I travel across the Sixth District, I also hear about the overwhelming difficulty associated with navigating HIPAA privacy restrictions, which can prevent caregivers from accessing a patient’s medical records or treatment options. In order to brainstorm ways to improve this system, I’m asking caregivers to share their stories with me and my staff and encourage others to do the same. I look forward to hearing about your experiences to better understand how HIPAA impacts the ability to care for an Alzheimer’s patient.”

“What people often forget is that Alzheimer’s affects not only patients, but their friends, family, and anyone else who helps look after them,” said Jen Belkov, Vice President for Public Policy & Advocacy at the Alzheimer’s Association Greater Illinois Chapter. “We applaud Congressman Roskam for spearheading this important initiative to garner feedback from caregivers about the HIPAA Privacy Rule. This conversation will enable caregivers to be heard by their representative and offer ideas to strengthen HIPAA."

 Click here or below to watch the announcement video: 

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