My best friend, Lopeti Penima’ani, really needs some help...
And so, I ask for yours.
In short, Lopeti is facing a great Cancer scare (the words, “you should get your affairs in order,” have actually been said). Yet, the way his insurance company is being operated in Arizona (the state he presently resides in, for reasons I’ll soon share), they seem much more concerned with red tape than with treating him!
Our objective is to relocate Lopeti back to the city he calls home, Salt Lake City, Utah, where he has a social support system, a medical support system, access to one of the best cancer treatment centers in the country, and where his current predicament would be much more swiftly addressed by the insurance company, due to a more efficient administration of the program.
In case you haven’t been following along with Lopeti’s battle with Barrett’s Esophagus, let me fill you in. For most of his life, Lopeti has suffered from acid reflux, or GERD, and as can happen when GERD is persistent, the lining of his esophagus has changed to tissue more like that which lines the intestines. This condition is known as Barrett’s Esophagus. Routine examinations several months ago, revealed that in Lopeti’s case, the condition had progressed to the next stage, esophageal adenocarcinoma, which, as the article above says, “is a serious, potentially fatal cancer of the esophagus.”
Despite the obvious seriousness, it took months of negotiations with his insurance company to agree to cover the needed treatment. On more than one occasion, Lopeti came back home from what was supposed to be the first of four ablations (a surgery in which a layer of the throat is basically burnt off), having accomplished nothing because the doctor or the surgery or the post-treatment medications would not be covered. Each time, weeks passed before the system was supposedly all lined up again. I mean, people DIE from this! Get your acts together!
Now, as the series of four ablations has finally been completed, it was the moment of truth, as they say. Were the cancerous cells eradicated or not? Two of three areas are clear, and one is “suspect.” This doctor must have really SUSPECTED it, though, to give him the grave warning about his affairs the way he did, but the insurance company considers the findings inconclusive and wants an endoscopy done by someone other than the surgeon for some reason. He was told to go back to his gastroenterologist, but when he did he was told that THAT guy can no longer accept his insurance! So, he needs a NEW gastroenterologist, for which he needs a prescription, of course. So, he had his PCP write one, but after awaiting word of an appointment, he found the script had been rejected, because it had to come from a DIFFERENT doctor!
Mind you, Lopeti IS jumping through all these hoops, but days and weeks are passing and when he finally sees the new gastroenterologist, there’ll probably still be a bit of courting before anything happens. Plus, he's already been made aware that changes have been made to his formulary (AFTER the deadline to switch had passed), such that some of the meds he’ll need if more treatment is necessary will not be covered. Good Lord, it should not be this difficult to get the medical system to work together to save your life from a medical condition!
And according to Lopeti and other advocates, it would not be so difficult ... if he simply resided in Utah. So we talked this over, and while Lopeti will continue "trying out for the circus," we’re going to try to get him back to Utah, where there’s a bit more certainty that such exerted effort as he’s been putting forth will not be wasted; he only has so many spoons, after all.
So... Lopeti needs to move from Arizona to Utah, he needs to take his elderly mother with him, and he needs to make this move immediately, to stop the threat of the Big C in its tracks! Our modest goal of $4,000.00 is to cover first month’s rent, deposit, and utilities (as well as application fees, if necessary) for TWO apartments – one barrier-free for Lopeti, and one senior apartment, with assisted living services attached for when they’re needed, for his mom – as well as pay for a moving company to load and transport the accumulated belongings of both parties and unload them in their two new homes and (probably) a storage unit—oh, and pay for that storage unit, for three months. If anything is left over, Lopeti will use it for insurance on his van, or to pay for gas for going back and forth to oncology appointments and making sure his mom is settled and comfortable in her new place.
Now then..., let me tell you the rest of the story!
It all started back in December, 1960, in Kearns, Utah. Says Lopeti about his awkward beginnings: “I used to trip a lot as a kid (thus the nickname of ‘Bobo’), but the family and I didn't realize it was due to a disability.” It turns out it was! Undiagnosed until he was in his 40’s, Lopeti had been exhibiting symptoms of Juvenile Primary Lateral Sclerosis (sort of a cousin to Lou Gehrig’s Disease) and Hereditary Spastic Paraplegia.
Lopeti was first hospitalized in the 5th grade for migraines, chronic pain, and ulcers and stomach problems, has experienced chronic pain problems since the 6th grade, and has had an ongoing struggle with chronic depression since about that time as well. Shortly after graduating high school, Lopeti moved to the island of Oahu in Hawaii where he attended Brigham Young University–Hawaii. Island life agreed with him and he remained there for a quarter century!
The disabilities of his childhood progressed, however, and he began walking with a cane at age 24, was using double canes by age 35, began using a manual wheelchair at age 38, and was using a power chair at age 41. This was just about the time the two of us first met at a disability rights action in Washington, DC, put on by ADAPT, and was also about the time Lopeti returned from Hawaii to Utah.
Having faced mobility impairment barriers for most of his life, when Lopeti moved to Salt Lake City, Utah, and fell in with a very active chapter of disability rights advocates, he was right in his element. In the decade that Lopeti remained in Salt Lake City, he held many prominent positions, including:
> Member, Governor's Council on Disability
> Member, Mayor's Council on Accessibility
> Board Member, DRAC (Disabled Rights Action Committee)
> Lifetime Commissioner, Martin Luther King Commission on Civil Rights (Salt Lake City)
> Disability Law Center (Protection & Advocacy of Utah)
> Member, Utah Developmental Disabilities Council
> Chair, Utah Transit Authority's Committee on Accessibility Transportation
> Secretary, Downtown Community Council of Salt Lake City
> Member, Easter Seals Project Action National Steering Committee (Washington DC)
> Member, ADAPT
> Participant, 144-Mile Free Our People March (Philadelphia to Washington, DC, 2003)
But then, about four years ago, Lopeti’s mother’s health took a turn for the worse. Being a vocal proponent of the Independent Living movement, Lopeti wanted to be there for her to help in any way he could. She lived in Arizona. So, Lopeti left his positions and his support system and moved to Arizona to an apartment so near his mother that he could just zip over there in his wheelchair at any time.
To be absolutely clear, he does not regret this decision whatsoever. He is a man happy to walk the walk on such critical issues as Aging in Place, Community-Based Living and, well, honoring one’s parents. And though he needs to relocate, he won’t leave his mom behind; it’s a package deal!
And by the way, Lopeti did not drop his advocacy efforts just because he moved to an unfamiliar town, even though his physical and mental health began to suffer almost immediately after the move. Even now, he is the activities director of his apartment complex, and either holds or recently held these positions of service to the community:
> Board Secretary, Arizona Center for Disability Law (Protection & Advocacy of Arizona)
> Member, Mayor's Council for the Disabled of Casa Grande
> Chair, Protection & Advocacy for Individuals with Mental Illness Council
Indeed, Lopeti is a steadfast advocate for people with disabilities. His mother needs him; the disability community needs him; hell, the world needs the faith-driven little reggae guy (it’s true–to know him is to love him).
And I’m not ashamed to say that I need my friend.
So let's all come together to bring Lopeti home to the supports he needs and the people he loves.
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