Nikeita’s Story

Nikeita

Pennsylvania, PA-02

My name is Nikeita Mumuni and I am from Prussia, Pennsylvania. I enjoy traveling, working with my church and community, and spending time with my son.

When I became disabled after being diagnosed with Crohn’s three years ago my life changed completely. I had to leave my job as a director of health and nutrition, a job I loved as I was able to support those in need of help. I am now on a fixed income through SSDI and Medicare.

I have not been able to fill my prescriptions for a few months now due to the cost. I do not qualify for Medicaid because they consider my income too high, even though I struggle every month to decide whether to pay for my rent, my electrical bills, food for myself and my son, and medicines.

Because I have been unable to pay the $400 copay (after Medicare) for my Remicaid for two months ago, I had to have a procedure on my left breast and have developed an infection due to the bacteria in my colostomy bag. I also cannot afford my $198 Lovenox injections or my Zenpep, which is $898. I run out this month.

I have to budget very carefully, and it’s only with the grace of God that I’m sustained. I have to cut corners often, and have to make hard decisions. Sometimes it’s as simple as deciding whether to buy meat or bread. Just making sure the basics are taken care of sometimes is a struggle.

I was passionate about helping people in need learn more about nutrition and staying healthy. I had families come into my job who needed diapers, needed food, needed medicine… single moms who stay home because of exorbitant childcare costs, working parents who work full time but still can’t make ends meet. I have always been an activist, but now I’m a recipient too.

Having access to safety net benefits like Medicare, SNAP, Medicaid, the ACA is a blessing. It’s wonderful to be able to have the resources there when you need them. I am shocked that our lawmakers are threatening to cut our programs and not expand them like the need to. Having benefits available makes me feel like I have a fighting chance. Without benefits, there is a grave fear of the unknown.

For me… I fear dying and not being able to be there for my son. If I don’t get the Lovonox injection will I get blood clots? If I don’t get this Remicade… will I die? Having access to benefits is a difference between life and death.

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