Black Lives Matter

To our wonderful CF community:

We want to uplift our communities by living in the truth that “Black Lives Matter!” Black people are murdered and brutalized every day. So, we #SayTheirNames by commemorating those recently lost to the world through white supremacist violence: George Floyd, Ahmaud Arbery, Breonna Taylor, Tony McDade, and so many, many, many others who were caught on video by the public as well as those who were not televised over the past couple of weeks and far beyond. 

We celebrate what made each of these individuals special and unique. Moreover, we celebrate their humanity—and the fact that a person does not need to be perfect in life to have value and to receive support. And we mourn the unfathomable challenges each of them faced in life before their deaths at the hands of people who should have protected them. But mourning, although extremely appropriate, does not suffice. We must take action: both in continuation of work we already do to uplift Black lives, and in new ways that reflect learning and growth at our highest levels of leadership.

We have been so proud and so privileged at Attain Health to show up for Black patients over the years by helping Black people living with CF to manage some of the biggest challenges of the disease, like diabetes. We also celebrate Pride year round by offering support groups for queer, trans, and intersex adults living with CF. We likewise offer focused spaces for people with CF of faith who find comfort in sharing a spiritual journey. And all of us in the CF community likely understand readily how deeply and intimately the struggle for Black liberation connects with the fight for health care access among people with chronic conditions.

Even before our entire country and the world rose up with street demonstrations and so many other brave forms of direct action in affirmation of Black lives, we know that many of you in the CF community shouldered the impossible burden of protesting your own systemic genocide while standing up for your Black peers. We see that labor and we center it. And more importantly, we honor it with action old and new.

So we want to share with you the actions that we already take—and those that remain in progress for the near future—to fully support and uplift our Black and intersectionally marginalized participants living with CF.

(1) Forming a focused support group for Black and non-Black adult patients of color. This was in progress before the demonstrations began, and we are excited to share more with you and host the first meeting as the summer unfolds.

(2) Starting a specialized group for Black and non-Black teen patients of color! We welcome volunteers to facilitate this group and are happy to assist you in getting oriented to the process of working with AttainHealth.

(3) Forming a focused support group for queer, trans, and intersex teenagers living with CF. We know from our existing work with the LGBTQIA+ patient community that your struggle for justice intersects tremendously with Black liberation efforts. In the spirit of the Stonewall uprising that defined Pride month, we want to expand our circle of support to our youngest community members who face these complex challenges.

(4) Holding regular monthly meetings for all of our group facilitators to discuss leadership issues and solve problems. Maintaining a strong culture of open and affirming leadership is one of the most important things we can do to uplift Black lives now and always. Many of our existing group facilitators have been highly active in racial justice movements for their entire lives, and are committed to continuing this process of improvement and growth.

(5) Convening special sessions for mutual support where members of our different adult and teen groups can come together to meet one another and discuss important social justice issues that impact all people with CF in ways shaped by systemic racial oppression and other forms of white supremacist violence. In these spaces, we will encourage non-Black patients to focus on listening and learning.

(6) We will also have some other special sessions where our groups can mix and mingle for lighter-hearted purposes. Self-care is an important part of the struggle for Black liberation and general racial justice, and one that is especially important for those of us living with CF. Taking time to have fun together will provide much needed healing space as we continue to do hard work.

Finally, we want to note that these actions are by no means a comprehensive list of everything that we could possibly be doing to uplift Black lives in the CF community. We absolutely welcome your ideas and contributions. We also want to stress that we will always welcome your feedback, not just during the next few weeks. The last four years have been a terrifying time for people with CF and other chronic conditions; and that fear has only increased recently. For our Black community members, all of this is magnified intensely.

Being Black with CF has often been a worse death sentence than any other experience of living with this progressive condition. We understand with piercing clarity that CF is extremely under diagnosed and under treated among both Black and non-Black patients of color. Likewise, we understand that patients of color and especially Black patients fall disproportionately into the 10% of people with CF still ineligible for any CFTR modulator therapy. 

Finally, and of tremendous importance, we understand in no uncertain terms how dangerous the world is right now for both people with CF and Black people because of COVID-19. For those of you who are Black *and* living with CF, the horror of the present moment could not be overstated even without the present threats. This vastly underserved subset of our patient community faces impossible choices right now in trying to protect your own health and that of others on the one hand, and trying to protest your own genocide on the other.

So we say to you now: We see you. We hear you.  We support you. We affirm you. We will do whatever it takes to provide spaces of healing for all of you. And there will never be a moment when your lives do not matter.

Please try your best to stay safe and to take care of yourselves as the world rises up for basic human rights that should long ago have been ironclad. That Black lives matter is the most basic of ideas, and will always stay close to our hearts in both words and deeds as we continue to serve the CF community.

In solidarity and action,

The Attain Health Team
Written by Dr. Xan Nowakowski