Medicare’s first ever Health Equity Conference kicks off in Washington today, hot on the heels of the agency’s controversial decision to restrict FDA-approved Alzheimer’s drugs late last week. Writing in the New York Daily News, Shanequa Levin marks the occasion by highlighting the disproportionate impact of the disease on Black families. They’re twice as likely to develop the disease and shoulder higher costs as unpaid caregivers compared to other groups. She describes the impact Alzheimer’s has had on her family and encourages the Biden Administration to reconsider Medicare’s treatment policy.
I didn’t fully understand the ravages of Alzheimer’s until I met my husband. His grandmother, Geraldine, was diagnosed in 1985 and lived for nearly two decades as the disease took her spark away. I only met her in these waning years, but my husband’s family loved to recall the proud, compassionate, ferocious woman she once was. Geraldine was a pillar of strength for all of them, the woman everyone came to for help—not just the family, but the people in her neighborhood and her community.
Losing her took a toll on all of us, but it was hardest on my husband’s aunt, who was Geraldine’s caretaker until she passed in 2004. Like most Black families, we couldn’t afford to hire someone. His aunt left her career to take care of Geraldine, which was a full-time job. It was agonizing to see his aunt not be able to participate in her own life.
Fortunately, new treatments may be coming to help combat this terrible disease, but as with so many medical breakthroughs we may be the last to benefit. Diagnostic and treatment centers are often distant, and transportation is challenging. As I have learned, you will likely need a PET scan to start treatment. Will the line be too long and keep us out? Will those with money or better advocacy be the ones to get it while others wait? How long before the Black community learns that they have not been given equal access to what might be a narrowly available product?
As a Black woman, I know how important it is to speak up for what is fair. That’s why I founded the Women’s Diversity Network, a non-profit organization that connects and mobilizes women and gender-expansive people of different backgrounds to create positive change through unity and collective work. Caring begins early in the maternal and child health programs my work supports. But caregiving doesn’t end when children grow up. It’s a lifelong role, and we often see the ways caregiving extends upward too, toward parents and grandparents. It’s a role that falls often on women, who not only give life, but also protect it for all our loved ones through every season.
This sacrifice is one we are willing to take on. Too often when tragedy strikes a family, you’re on your own. If treatments that can help a mother or grandmother are delayed, that burden just gets bigger. In our family, we had to watch my husband’s aunt take on that heavy load. My hope is that my community is at the table when people are making decisions that affect us, and that delivering meaningful help becomes more than just another fight in Washington that’s completely out of touch with the experiences of families across the country.
You can read the full piece here.