UPDATE FROM NIESHA NEAL: “On June 18, 2021, I received a kidney and pancreas from a deceased angel donor—the recovery after the transplant presented its challenges, with a difficult first month. A few days after surgery, I faced a bad allergic reaction, requiring me to be put on a ventilator. However, through it all, I emerged stronger than before.

While adjusting to life after the transplant, I continued my work as a domestic violence collaborative community partner. Additionally, I remained a Board Director advocating for end-stage renal disease patients with IPRO ESRD Network. I also became a Certified Professional Coach, establishing "Exhale & Empower" to support others on their transformative journey of self-discovery and empowerment while overcoming health and life challenges.

I vowed to my donor to impact and empower others, and that's what I will hold firm to. Every step of my journey is a testament to the power of transformation and the resilience of the human spirit. We all can rise, by making the most of this precious gift of life.”

ORIGINAL POST:

INDIANA ACTIVISTS LINK PENCE, HOLCOMB TO MASSIVE MEDICAID MISMANAGEMENT, EXPOSE FAILED ATTEMPT AT PRIVATIZING HEALTHCARE IN 7 STATES + DC

WITH STAGE 5 RENAL FAILURE AND YEARS ON THE NATIONAL ORGAN DONOR LIST, NIESHA NEAL WON’T STOP FIGHTING FOR HOOSIERS LIKE HER.

Written by Rachael Himsel, edited by Hope Leeper

Oct. 22, 2020

In 2018, Governor Eric Holcomb (chosen by Mike Pence to fill the spot he left behind) signed a $128 million contract into effect that would dismantle Indiana’s current Medicaid system and outsource it to an unaccredited 2-star Georgia-based company called Southeastrans. Within weeks, the company’s phones were blowing up with complaints. Unable to fix the system in a timely manner, the complaints then escalated and hundreds of Hoosiers contacted their elected officials to do their jobs and help them.  Republican and Democrat state legislators co-authored an oversight committee to monitor Southeastrans and the alarming number of complaints they were getting - drivers never showing up, completely missed appointments, being left at a doctor’s appointment for 10 hours after an appointment was over, having to get a ride home from a nurse, being an hour late for a 4-hour dialysis treatment, getting in a car accident, dirty cars, rude drivers…

Thanks to the activism of Erin Stennett, I was connected to an amazingly gutsy woman named Niesha Neal (pronounced Nigh-ee-sha) who tells me she has been left stranded at home or at her dialysis appointment about 20 times in 1.5 years, she says. After about the 20th time she sat at home, missing her dialysis treatment due to mismanagement by Southeastrans, Niesha finally decided to drive herself to and from her exhausting- but life-saving - 4-hour dialysis treatments every Monday, Wednesday and Friday.

Still, the drive home from 4 hours of dialysis can be difficult: 

“I’ve had days where I will just put the car on, turn my music on and I have to take some time to get myself together. And I start to get frustrated by this situation, that a system that we pay our tax dollars into is failing. But then I can also look at that and say, Well, this is about the equivalent of me having to wait in the lobby for a late ride. And it’s actually a shorter time than I’ve spent waiting for rides that never came!,” she says. “If I’m going to have harm done to my health, let it be because of my mistake, because I was late, not because of something that the state and my insurance provided for me has repeatedly failed me. I was fed up with having to explain why I didn’t get to my appointment.” 

“And I feel like 'I’m one of the lucky ones!” she says. “I’m still on the organ donor list, I’m still alive, and there are others who have been laid up in a hospital or dead because they missed an important appointment.”

“I was one passenger out of several thousands. So if it’s happening to me, who else is dealing with this? I like to be a voice for the voiceless... So I just started raising hell…” 

“It’s upsetting when you think about the amount of Hoosiers who are not able to get treatment, and all because of transportation - and the lack thereof,” she says. “This is something that is supposed to be provided for us, as a public service. And those of us who have a need, can’t get what we need. 

After years on the organ donor waitlist for a new kidney and pancreas, Niesha is used to waiting - but she shouldn’t have to wait on a ride that is being paid for with tax dollars from her husband’s salary, your salary, and mine, that is meant to help families like Niesha’s who are affected by serious diseases and disabilities.

Niesha deserves better. Indiana deserves better.

So why would Holcomb sign the deal with a company that is not accredited by the Better Business Bureau, with a rating of two out of five stars and a CEO with a 21% approval rating on Glassdoor?

FROM CRIMINAL JUSTICE TO MEDICAID INJUSTICE

In 2015, Niesha was happily married with two teenage sons and about to take the LSAT for law school. 

But life had other plans for her.

2015 was the year Niesha found out she had advanced to stage 5 renal disease, the final stage of kidney failure. Without dialysis, she would die. And without an organ donor match, she would never be able to quit dialysis. 

Niesha was strong though. Gutsy. Used to challenges. At 13, she’d been diagnosed with juvenile diabetes (type 1), one of the top two causes of renal failure. At a time when most kids are worried about grades and crushes, Niesha’s worries were different - like how to deal with a terrible disease that affects 422 million people around the world, and how to make the most of every minute she had in case her disease killed her. Even as a teen, Niesha understood how serious her condition was, and worked hard to stay fit and eat healthy. 

Then, when she was 19, Niesha got the second part of the one-two punch life would hand her: pregnancy-induced high blood pressure. She was able to deliver her first son A’Dante safely, as well as her second son Tyre’k, one year later.

But still, even with these complications, even as her body grew weaker, Niesha wouldn’t give up on her family, or herself. She enrolled in classes at Indiana Tech, and started working toward a degree in criminal justice. She tried to study during the four-hour block of dialysis she had scheduled for Monday, Wednesday and Friday mornings, but found it difficult to concentrate. Bright lights, voices, and sounds surrounded her at US Renal Care, so instead of reading, she often found herself praying silently that today no one would die at the clinic, and imagining what it would feel like when her name was at the top of the organ donor list for kidneys.

It was then, at age 35 and in stage 5 of renal failure, that Niesha finished her BA, and started making plans for law school. As long as she had support from her family and friends, she thought she could do it. In the meantime, she became a nanny to help support her family.

But in 2018, Niesha was faced with a new threat: the deadly mismanagement of newly-selected Medicaid transportation provider, Southeastrans, owned by Republican donor and Georgia Governor’s Committee member Steve Adams.

“Before Southeastrans came along, getting back and forth to my dialysis appointments was pretty simple,” Niesha tells me. “There might have been an occasional wait, but my husband and I agreed that I shouldn’t be driving to or from my appointments,” says Neal, who uses a detailed analogy to describe what dialysis is like: “After dialysis you are tired,” she starts. “Imagine going to work for say, 12 hours, then after work you’re going to run a 13.2 mile marathon, and then walk home. And then someone says, ‘You know what, I need you to help me with some work for a few hours this evening…’ and imagine how tired your legs are by now. How weak you feel. That’s dialysis.”

“There were times I had to call my husband at work and ask him to pick me up, she continues. “I was told by the provider (hired by Southeastrans) that they didn’t have anyone available, even though I had followed their procedure and made my appointment well in advance.” 

Having used the Indiana Medicaid system for several years, Niesha has joined forces with other Hoosiers who have lost loved ones due to the difficulties encountered by the Republican’s attempt at privatizing healthcare since 2018. Though the details for how Southeastrans was selected for the $128 million contract were not publicly released, the trail from the Indiana governor’s office to the CEO of Southeastrans is an awfully short one…

FROM PENCE TO KEMP TO ADAMS:

WIN BIG BY BETTING ON THE CRONIES

From his days as governor of Indiana, in between making it legal to discriminate against people for their sexuality and taking women’s rights back about 70 years, Mike Pence got to know Brian Kemp, Governor of Georgia. They are so close that Pence stopped in for a lunch to celebrate the great 2020 pandemic this summer. 

From Kemp, there’s a direct connection to the CEO of Southeast Trans, Steve Adams; according to the Southeast Trans site, “He was appointed by the Governor to serve on the Georgia World Congress Center Board of Governors and is also on their Finance and Personnel Committees.” 

According to Campaign Money, Adams has donated $17,800 in the past year to Republican campaigns, though all in politics know that money moves through different names.

After searching both the State of Indiana’s Medicaid site and the Southeast Trans site, we found that no administrative plans or town halls have been shared online since 2018. 

I reached out to Southeastrans for comment for this series of interviews, but no reply was received.

“We the patients have to deal with the fallout... we have to ask the centers if they will make up that lost appointment, and if they don't make up the difference, that is time we lose dialyzing, to remove toxins and fluid from our bodies. Apparently Southeast does not red-flag or prioritize dialysis patients. I don't know how the poor chemo patients are being treated," Niesha wrote in an email to her new-found friends across the state, who understand all too well what it’s like to follow the rules, to make their appointments two weeks in advance (as you’re told you must) and then to wait and wait while no one shows up… and you are left home alone, dressed and ready to go...and no way to leave your home.”

Imagine that feeling, of being trapped, dear reader, a feeling that most do not have to deal with. Driving, for many, is about having control. Now imagine no wheels, and no money to pay for a cab… you’re trapped. 

Niesha Neal was trapped - by a system designed to keep the stockholders of Southeastrans wealthy - because the deeper your friend’s pockets are when it comes time for an election, the easier it is to get elected, right? And most of all, if Mike Pence can show the rest of the country that he can privatize part of the Medicaid system in his home state, then wouldn’t that guarantee him re-election?

The problem is, that plan to privatize healthcare is failing miserably, and the only thing to show Americans is a log book full of ‘valid’ complaints and pictures of people who have died either directly due to negligence or because they just gave up their fight because they felt their government had given up on them.

Past employees have spoken up on behalf of the Medicaid clients as well:

A dispatcher from Atlanta has said: 

“Management is awful. To have no training when it comes to logistics or anything to do with transportation - very terrible company,” while a former Customer Service Representative claims, “They need new management! The other employees are ok to work with. Management and Human Resources all need to be replaced with new and knowledgeable people. They do not care about the members.” (March 11, 2020)

Another customer service representative, this one from College Park, Georgia, said: “I would not recommend this company. They only care about the money. They want you to lie to the members by telling them what they want to hear. Southeastrans need(s) to be investigated for neglecting Medicaid members and not providing transportation after they have booked their appointments a month in advance.” (January 28, 2020)

As my dad used to say - get it straight from the horse’s mouth...

He also said often, You can lead a horse to water but you can’t make it drink… and I believe America is thirsty for truth. 

There was only one thing Niesha could do in order to make it to all of her dialysis appointments: “I said to hell with Southeastrans!”

ARE YOU MY TYPE?

I have to ask. 

“What kind of blood type are you?”

“B,” she says, and I say, “Oh, I’m A positive!” Then Niesha explains the pairing process - where if she has a friend or family member who is willing to donate a kidney, and they have a matching kidney for her, the two strangers make arrangements to help each other out. I may not be off the hook! I force myself to imagine the potential negative impact of a kidney transplant, and then I force myself to imagine the reality of Niesha’s life: she cannot live forever on dialysis. 

As if reading my mind, Niesha tells me how she has been doing her best to get the word out about her situation, telling me she has 1700+ followers on Facebook, where she works hard to get the word out - especially to the black community - that organ donors are desperately needed, and the topic should not be avoided as it was in her home. 

When Niesha was sixteen and went to get her drivers license, she remembers seeing this check-box next to the words “Organ Donor” and not knowing what it meant: “I was like, “Oh, no! I’m not gonna donate my organs! Ewww!” but I turned to my mom, to see what she thought, and she shook her head and said, ‘Don’t worry about it.

Little did Niesha know that she would have to worry about it in her own future, and her life could very well depend on someone checking that little Organ Donor Box - or not.

Since her name was added to the organ donor list five years ago, she has had two calls for a potential match, but both fell through. Her immediate family members are either not a blood match or poor candidates for surgery, so she is being forced to wait for the generosity of a stranger… or the death of someone who has a matching blood type. 

A BIRTHDAY GIFT FOR NIESHA

Niesha’s 40th birthday is coming up, November 26. Besides a kidney or a pancreas, what would you like for your birthday this year, I ask? 

We both laugh, and she says, “You know, even if you can’t give a kidney - make sure you’re an organ donor, please.” Sounds like a pretty fair request from someone who has to spend twelve hours a week hooked up to a dialysis machine and wants the chance to meet her grandchildren one day.

Niesha also tells me that she and her husband are looking for a new house - one without stairs. “There are times when I’m down on the bottom step in tears. I am looking up and I know I need to get the strength to get up those 13 steps. I am exhausted from my dialysis… and I am exhausted by the thought of not mattering.”

We cannot allow our fellow Hoosiers to feel like their lives don’t matter.

Now more than ever, we have to vote for the leaders who not only say they will put people over politics, but who actually put people over politics! People who are teachers, doctors, nurses, editors, and activists - people who are not beholden to big business. 

So please, this fall, help elect the people who will turn Indiana’s outdated, outsourced, and poorly managed healthcare system around quickly and efficiently. We talk about how crazy it is that we have a gubernatorial candidate who is an actual medical doctor and former commissioner of public health in Dr. Woody Myers, and she tells me she and her son went to vote together already, exercising her primary way to affect change for herself and others

Oh, and that bipartisan oversight committee I mentioned? Hasn’t released a new report in 1.5 years. It’s time to call your state reps and senators, and tell them access to vital appointments is NOT something we can forget about. Tell them you expect better because Niesha and our Medicaid clients deserve better

I did find a complaint log for Southeastrans’ “service” in Indiana, and read through 58 complaints for the month of February alone - all of which were found ‘valid’ - including “wheelchair flipped backwards,” “member called several times, stated she is outside cold because the doctor’s office closed and the provider has not came and got her yet, provider stated they will be there in another 10 mins,” and “driver hit someone’s car...report made already can not be picked up until Monday.” 

6:43am - “I'm still waiting to be picked-up for my 6:45am dialysis chair time," Niesha writes to others across the state who have formed a sort of support group that could best be titled "Hoosiers Lost & Left Behind by Republican Greed" - a group full of people who’ve missed so many appointments, they wanted to give up, often only returning to treatment after a friend or family member convinced them to. 

There is something that happens when you are told repeatedly by people acting on behalf of your own government that you don't matter, that you can be forgotten so easily: You start believing it. 

Luckily, there are gutsy women who won’t give up on you… we are going to do better in 2021, Niesha.

Right?

SoutheasTrans did not reply to interview requests.