I met with Police Chief Bart Acquirre today. Chief Acquirre is from Wichita, KS. His father was a steak salesman and they moved here when he was in the 6th grade.
Chief Acquirre has always been a gun collector and interested in guns so he went to be a firearms expert and study forensics. He got his masters in Science at the University of Alabama and then went to the training academy.
He started as a reserve officer, moved to dispatch with Lee County, and then was hired as a Lee Co Sheriff. He has also worked in the medical, legal, death investigation branch.
His most interesting case was being called to house where a dog dug up human remains in the front yard.
Chief Acquirre says that law enforcement has to be like a ministry. God has to lead you to it because you are there to serve your fellow man. You have to love what you do.
He says that God has been working in his life for 36 years through law enforcement. It gives him pleasure that he can serve Him and the people through this job.
Being in law enforcement has taught Chief Acquirre many things such as: patience, humility, and open mindedness.
An interesting fact about the Tupelo police department is that their building came from an undercover investigation. They worked with the FBI for 5 years to investigate cigarettes being distributed out of this building. At the end of it all, they seized airplanes, cars, bank accounts, corporate accounts. The investigation covered 26 states and over 50-60 defendants. The FBI shared some of the funds with Tupelo Police Dept to help with the building fund. The city gave the rest. And it is a really cool building.
Here is an easy, searchable copy of the text from Tupelo Mayor Jason Shelton’s Executive order 20-019
The following Local Executive Order further amends and supplements all previous Local Executive Orders and its Emergency Proclamation and Resolution adopted by the City of Tupelo, Mississippi, pertaining to COVID-19. All provisions of previous local orders and proclamations shall remain in full force and effect.
LOCAL EXECUTIVE ORDER 20–019
Governor Tate Reeves in his Executive Order No. 1492 instituted a statewide Safe Return order to restart the economy, open all businesses and non-profits operating within Mississippi, and permit the resumption of community activities subject to limitations to minimize person to person interactions and associated risk of transmission of COVID-19.
Governor Reeves further amended Executive Order 1492 by Executive Orders, 1496, 1500, 1505, 1508, 1511, and 1514 which remain in full force and effect until 8:00 a.m. on Monday, August 17, 2020.
In response to Lee County reporting higher numbers of new cases over shorter periods of time accounting for a larger percentage of the State’s overall case count, having a higher percent incidence of positive cases per number of test performed, evidence of shared workforce between jurisdiction with common risk factors, and other public health indicators reflecting ongoing community transmission, the Governor established additional measures necessary to disrupt the spread of COVID-19 with Lee County.
These measures include:
All businesses and business operations:
Employees must be screened at the beginning of their shift requiring at a minimum these questions to be asked: 1. Have you been in close contact with a confirmed case of COVID-19 in the past 14
days? 2. Are you experiencing a cough, shortness of breath, or sore throat? 3. Have you had a fever in the last 48 hours? 4. Have you had a new loss of taste or smell? 5. Have you had vomiting or diarrhea in the last 24 hours?
Any question answered affirmatively requires the employee to be sent home or for further medical evaluation.
Congruent with the City of Tupelo Mayor’s Executive Order 20-018, face coverings are required for all employees who are unable to maintain a minimum of 6 feet of separation from customers and other employees.
Expanding the City of Tupelo Mayor’s Executive Order 20-018, all customers shall wear a face covering, covering nose and mouth, while inside businesses and business operations subject to specific exceptions.
Expanding the exceptions in 20-018:
• Persons seeking to communicate with someone who is hearing-impaired in
a way that requires the mouth to be visible. Persons while giving a speech, presentation, or performance for a broadcast or to an audience. Person actively providing or obtaining access to religious worship (NOTE wearing a face covering is strongly encouraging) . Children under the age of (6).
The sale of alcohol in bars is limited to only seated patrons. Restaurants and bars shall not sell alcohol between the hours of 11:00 p.m. and 7:00 a.m.
Restricting indoor social gatherings/activities to a maximum of 10 participants and a maximum of 20 participants outdoor. This restriction shall not apply to religious entities, students in classrooms, or gatherings in facilities governed by other capacity limitations.
Congruent with the City of Tupelo Mayor’s Executive Order 20-018, face coverings are required to be worn both indoors and outdoors in public. This does not apply to individuals engaged in organized school athletic practices, including weight training and outdoor practices, or other outdoor exercising.
Additionally, the City of Tupelo Parks and Recreation Department will not be scheduling any games or tournaments until September 8, 2020, at any facility or field. This will allow for preparation for the coming fall season.
Additional information can be found at www.tupeloms.gov COVID-19 information landing page.
Pursuant to Miss. Code Anno. $33-15-17(d)(1972 as amended), this Local Executive Order shall be effective at 8:00 a.m. on August 3, 2020, and shall remain in full force and effect until 8:00 a.m. on August 17, 2020, under these terms until reviewed, approved or disapproved at the first regular meeting following such Local Executive Order or at a special meeting legally called for such a review.
The City of Tupelo reserves its authority to respond to local conditions as necessary to protect the health, safety, and welfare of its citizens.
We are starting our Friday morning off in the upper 70s, under partly cloudy skies. Showers and thunderstorms will be possible this afternoon and evening. All of North Mississippi is in a Level 1 out of 5 severe weather risk. Heavy rain, lightning and damaging wind gusts will be possible with the stronger storms. We will have an afternoon high near 91 with heat index values as high as 105! Southwest wind 5 to 10 mph. Chance of precipitation is 80%. New rainfall amounts of less than a tenth of an inch, except higher amounts possible in thunderstorms.
TONIGHT: Showers and thunderstorms will be likely. Otherwise, Mostly cloudy, with a low around 73. Chance of precipitation is 60%. New rainfall amounts between a tenth and quarter of an inch, except higher amounts possible in thunderstorms.
SATURDAY: Showers and thunderstorms likely. Otherwise, partly sunny skies, with a high near 85. South southwest wind 5 to 10 mph becoming west in the afternoon. Chance of precipitation is 60%. New rainfall amounts between a tenth and quarter of an inch, except higher amounts possible in thunderstorms.
SATURDAY NIGHT: Partly cloudy, with a low around 66.
SUNDAY: Mostly sunny, with a high near 88. Calm wind becoming west northwest around 5 mph in the afternoon.
SUNDAY NIGHT: Mostly clear, with a low around 66. Northwest wind around 5 mph becoming calm.
About the only thing certain about this college football season is that we won’t have crowds like this one in Mississippi.
So the news of the day is that the Southeastern Conference has decided to play a 10-game, conference games-only football schedule this fall. Opening day is scheduled for Sept. 26. The SEC Championship game is moved back two weeks to Dec. 19.
We’ll see…
This news comes a day after the Atlantic Coast Conference announced that league will play an 11-game season that will include 10 league games and one non-conference game. Furthermore, the ACC setup will include Notre Dame as an ACC football team for the 2020 season.
Rick Cleveland
So at least we finally have answer to the age-old college football question: What will it take for Notre Dame to join a conference in football? A global pandemic, that’s what. Hell did not have to freeze over.
Interestingly, the ACC decided on the 10 and 1 format to allow for traditional in-state rivalries such as Florida-Florida State, Kentucky-Louisville, South Carolina-Clemson and Georgia-Georgia Tech to be played. One day later, the SEC answered: No need, at least not on our account.
Early reports are that Kentucky and Tennessee will be added to the Ole Miss schedule and that Florida and Vanderbilt will be added to State’s schedule. Those reports have not been confirmed and very well could be premature.
What we all must understand is that all this is tentative. Nothing at all is certain. Right now, a 10-game schedule, all SEC games, is simply a best case scenario.
I say that because if you lay a map of the Southeastern Conference’s 11-state imprint over a map of the country’s region hardest hit by the pandemic, it’s almost a match. Florida leads the nation in per capita COVID-19 cases. Mississippi is No. 2, followed by Louisiana and Alabama. Tennessee, Georgia and South Carolina are all in the top 10 – a top 10 in which nobody wants to be included.
Unless these numbers change drastically – and there’s no indication that they will – it’s difficult to see a 10-game season being started, much less completed. Repeat after me: There is no social distancing in football. None.
Major League Baseball’s return to play has shown us just how iffy this all is. We are just a week into the schedule several games have been postponed. Six teams’ schedules have been altered. One team has as many as 19 positive cases. And this is Week One.
And that’s baseball, not football. That’s professional, not amateur.
Now seems a good time for a reminder that Mississippi’s current statewide restrictions limit gatherings to 10 people indoors and 20 outdoors and call for social distancing of six feet of separation between persons who do not live in the same household. College football teams have 80 or more players. They are rarely six feet apart. Granted those are the guidelines until mid-August, but we have no good indication it will change. Our numbers have not been going in the right direction.
Let’s put it this way: Much must change between now and Sept. 26 for the SEC to have any hopes of playing that 10-game, league-only schedule. And so much still must be decided: Will fans be allowed? How many? Who gets in?
More than just SEC teams are affected by this. Southern Miss was scheduled to play at Auburn Sept. 26. That game, which would have paid Southern Miss $1.85 million, obviously won’t be played. And so an already strapped USM athletic budget takes a huge hit. These days, everybody is taking financial hits.
USM athletic director Jeremy McClain announced he will search for another game on that date. He was already searching for a game on Sept. 19 to replace Jackson State because the SWAC, to which Jackson State belongs, has postponed its football season until spring.
That SWAC plan, too, is a best-case scenario. Right now, until we have a vaccine, everything is tentative.
Mississippi Today is pleased to announce Kayleigh Skinner as managing editor.
Skinner joined the Mississippi Today staff in January 2017 as an education reporter and has advanced to a senior staff member in her three years with the company. Skinner most recently served as deputy managing editor before assuming the role of managing editor.
“As a reporter, Kayleigh helped shape our coverage and hold many of the most powerful Mississippians accountable,” said Adam Ganucheau, Mississippi Today’s Editor-in-Chief. “Now as an editor, she’s doubled down and clearly proven just how important her voice and her leadership is in our newsroom. I couldn’t be prouder to work with her as we seek to inform and engage Mississippians and move this state forward.”
Skinner, a native of Canada, earned her bachelor’s in journalism from the University of Mississippi and has covered education in the South for six years. At Mississippi Today, she has focused on education and politics and how they intersect to impact the lives of people in Mississippi.
“With newsrooms shrinking across the state, I take very seriously our responsibility to keep Mississippians informed and hold our elected officials accountable,” Skinner said. “It’s not lost on me how important it is to have a diverse set of voices and opinions in the newsroom, and I am thrilled to step into this new leadership position at Mississippi Today and play an even larger role in shaping and directing coverage. Most of all, I hope to be an example for people who look like me that it’s possible to grow and move up in this industry.”
Skinner will work alongside Ganucheau to manage the newsroom’s daily and enterprise reporting, and craft broader editorial strategy. She is a member of Mississippi Today’s six-person management team where she plays a key role in organizational development and long-term vision for newsroom growth.
“Kayleigh has been critical in steering our team through one of the most historic news cycles in state history, elevating our brand and readership to the greatest heights we’ve since our launch in 2016,” said Mary Margaret White, Mississippi Today CEO and Executive Director. “Kayleigh is a natural leader and has proven herself both in the newsroom, and in the boardroom. She has just the right mix of editorial chops and emotional intelligence, making her a rising star in the journalism field.”
Before joining Mississippi Today, she worked as a staff reporter at The Commercial Appeal and Chalkbeat, both in Memphis, and The Hechinger Report in Jackson. She was a member of the 2018 class of the ProPublica and Ida B. Wells Society Data Institute and was a member of the 2016 Robert F. Kennedy Human Rights Journalism Award-winning team.
Mississippi teen who has languished in jail for 17 months without an indictment is just ‘one of thousands’
Sixteen-year-old William Haymon has spent more than 500 days in an adult jail in rural Lexington, Mississippi. There are no state rules governing how long a person can be incarcerated without being formally charged with a crime.
On July 14, the day that William Haymon turned 16, he spent his 511th day in jail. He has been incarcerated without bail in the Holmes-Humphreys Regional Correctional Facility, an adult jail in rural Lexington, Mississippi, since February 2019. In those 17 months, prosecutors have yet to present charges to a grand jury so it can consider whether the state has enough evidence to pursue a conviction against him.
This delay, according to the local district attorney, Akillie Malone-Oliver, who prosecutes the state’s 21st judicial district, is primarily because of turnover in the city police department that is investigating the charges. But Haymon’s prolonged incarceration is emblematic of a larger issue facing Mississippians who are arrested. There are no rules governing how long a person can be incarcerated without an indictment. As a result, people can languish in jail for months and years before they are formally charged with a crime.
Haymon’s attorney, Lawrence Blackmon, has attempted to win his client’s release by alleging that the county is illegally detaining him and violating his constitutional right to a speedy trial. While Malone-Oliver has defended Haymon’s imprisonment as a path to self-improvement, Blackmon has argued that Haymon is missing school—he would be starting the 10th grade in the fall—and will experience lasting harm from his incarceration as a child. So far, those arguments have failed to secure Haymon’s freedom.
“It’s taking his childhood away from him,” Haymon’s mother, Sebrenda Tillman, told The Appeal. “As long as he’s been there, what are you holding him for? Somebody ain’t doing their job.”
Haymon’s case dates back to June 2018 when, at the age of 13, he was arrested on an armed robbery charge for allegedly stealing from an elderly man at gunpoint. He was quickly released on a $25,000 bond after waiving a preliminary hearing. Then, in February 2019, Haymon was arrested on an aggravated assault charge involving a gun and another teenager. Bail on the earlier charge was revoked because he was already out on bond for armed robbery when he was arrested for the alleged aggravated assault. Under state law, he was not entitled to another chance at bail.
Blackmon practices privately but agreed to represent Haymon pro bono after the public defender originally assigned to his aggravated assault case died in January. During the first year of Haymon’s incarceration, the public defender never visited his client at the jail, Blackmon said. Since taking over the case, Blackmon has filed a petition for habeas corpus alleging that Haymon is being unlawfully detained and another motion arguing that he should be released since his Sixth Amendment rights to a speedy trial have been violated.
At a May hearing, a prosecutor asserted that Haymon has been incarcerated for so long because of “turnover” of police chiefs and investigators with the Durant Police Department. An investigator who took over the role last summer and would be responsible for Haymon’s case testified that she had not looked into the charges at all. She has presented to the grand jury only once since becoming an investigator, though several grand juries have convened since Haymon’s first arrest.
Despite evidence that Haymon had been held for months without movement on his case, Circuit Court Judge Jannie Lewis-Blackmon—no relation to Haymon’s attorney—ruled at the end of the hearing that his right to a speedy trial had not been violated because “the reason for the delay outweighs the length of the delay,” according to a transcript of the proceeding. She has also denied that Haymon is being held unlawfully under habeas corpus.
Lawrence Blackmon has argued that the accuser in the armed robbery case has died, making it difficult to win an indictment. Even if the DA did, it would be hard to secure a conviction without the witness, he said. He told The Appeal that the accuser in the aggravated assault has not been interviewed since the day of the alleged crime and does not want to pursue charges against Haymon.
In a telephone interview with The Appeal, Malone-Oliver, defended her decision to oppose releasing Haymon. She called him a “menace” and said that he had a long history in the state’s legal system for children (information on those cases is sealed). Though she could use her discretion to push for Haymon’s release, she blamed his extended incarceration on the judge who has so far ruled against him and community members who she says have called her urging her not to release him.
“If that person gets out and offends somebody else, the first thing the community is going to say is he has already been deemed a threat,” she said of her fears that he would commit a crime upon release.
Asked if she had considered the effects of incarceration on a child, she said, “I hope that he will be a better person. I hope that for all defendants. I hope that they will do better and I worry about the effects this has on the people that were affected.”
In Malone-Oliver’s district, the grand jury meets twice a year, she said. She was planning to present Haymon’s case to a grand jury that was convened in June, but that was canceled due to the COVID-19 pandemic. She is planning to present the case to the next grand jury which should meet “soon,” though she acknowledged that was dependent on the coronavirus.
“The district attorney is the top law enforcement officer of the district,” said Blackmon of Malone-Oliver. “So over the course of this battle for this kid’s freedom, they’ve made every excuse in the book.”
“He has received no education, he’s locked up with adults, fighting adults,” he added. “At this point, this is a case of child abuse as far as I’m concerned.”
Haymon’s stagnant case is the result of several issues within the state’s criminal legal system. In Mississippi, there is a deadline between indictment and trial, but prosecutors have an unlimited amount of time after someone is arrested to seek an indictment, sometimes leaving people in jail for years.
Conversely, neighboring Louisiana has a 60-day deadline for prosecutors to win an indictment after a person is jailed on a felony charge. If that deadline passes, the person may be entitled to release. In the federal system, that deadline is 30 days.
To remedy the problem, advocates from the MacArthur Justice Center suggested to Mississippi lawmakers in 2016, when the Supreme Court was revising its Rules of Criminal Procedure, that the state implement a rule that charges must be dismissed if a grand jury doesn’t return an indictment in 90 days. It was not adopted.
The issue was also at the center of a 2014 federal civil rights lawsuit filed by the MacArthur Justice Center and American Civil Liberties Union against Scott County, Mississippi. According to the complaint, one man had been held for 16 months before he was indicted, then never went to trial. He was arrested again and held for nearly a year waiting for his case to be presented to a grand jury. It never was, and the sheriff released him without a hearing. Another man was held in the jail for eight months without indictment, according to the lawsuit. It was settled in 2017, with the county agreeing to implement changes to bail and its public defense system, but no new rules were introduced regarding holding people for extended periods without a grand jury hearing.
Holmes County, where Haymon is incarcerated, is among the state’s jails where people are held the longest. A database tracking lengths of stays in Mississippi jails shows that people in Holmes were incarcerated for an average of 417 days, according to data compiled in December 2019.
State Public Defender Andre De Gruy told The Appeal that solving the issue will take more than introducing deadlines. He said that the state needs to improve its defense system for poor people who cannot afford attorneys. There are virtually no statewide standards for public defense systems so poor, rural counties often rely on private contract attorneys who are selected by a judge and are often overburdened.
“The biggest problem is that you don’t have qualified lawyers with reasonable caseloads and resources to represent their clients,” De Gruy said.
Additionally, children who could go through the state’s juvenile system are often stuck in the adult system. Crucially, defense attorneys do not receive evidence against their client, such as police reports and interviews—information they could use to show he or she should be tried as a child, until after their client is indicted. But once a child is indicted as an adult, they are bound to stay in the adult system. In Haymon’s case, his alleged crimes are what qualified him to be charged as an adult.
Paloma Wu, deputy director of Impact Litigation at the Mississippi Center for Justice, told The Appeal that Haymon is “one of thousands” in the same situation. “It’s not falling through the cracks, that’s an inaccurate way to talk about this case,” she said. “This is not the exception to the rule, this is the rule. These are the rules in the Mississippi criminal system working as they’re supposed to.”
Blackmon is planning to file an appeal of the habeas decision to the Mississippi Supreme Court on the basis that Haymon is being unlawfully detained. He could also file to transfer Haymon to the youth court system because of his age when he was arrested. If Malone-Oliver does win an indictment on the armed robbery charge, Haymon could face up to life in prison.
Tillman, his mother, said her son has described conditions at the jail as “rough.” Early in Haymon’s incarceration, he got into an altercation with an older inmate and has since been moved to another part of the jail with people closer to his age who agreed to protect him.
“He’s trying to hold up,” she said.
Tillman has been unable to visit Haymon since March because of the COVID-19 pandemic but talks to him on the telephone regularly. Usually, she said she would take Haymon out to dinner for his birthday. Instead, she celebrated the last two years by putting money on his books so he could buy something from the canteen.
“I worry about him, some nights I can’t sleep because he’s my baby,” she said.
The Appeal is a non-profit media organization that produces original journalism about criminal justice that is focused on the most significant drivers of mass incarceration, which occur at the state and local level.
Lawmakers do not have to wait for a special session called by Gov. Tate Reeves to return to Jackson to deal with his veto of more than $2.2 billion in funding to the local school districts, according to various legislative sources.
Legislators could reconvene on their own under the conditions of the resolution they passed extending the session until Oct. 10.
“If he (Reeves) decides not to call us back, we would have to consider all options available,” said House Pro Tem Jason White, R-West, when asked about the possibility of coming back on their own. “The education budget is more than a little bit significant. The education folks are concerned – rightfully so. They want some finality to their budget.”
Reeves has said he is waiting to call legislators back into special session to deal with the education veto and the lack of funding for the Gulf Coast-based Department of Marine Resources until the COVID-19 outbreak amongst legislators is quashed. About 30 legislators tested positive for the coronavirus, including both presiding officer Philip Gunn in the House and Delbert Hosemann in the Senate. Most tested positive in early July.
In recent days legislative leaders have said most of their members have recovered and they are ready to return to the Capitol in early August to deal with the education budget, the Marine Resources budget and other issues.
Reeves is being non-committal on when he might call them back.
“We are looking to bring them back at the right time when it is safe for everyone for them to come back,” Reeves said recently on the Paul Gallo radio show.
The state constitution gives the governor the sole authority to re-convene the Legislature in special session once lawmakers adjourn the regular session for the year. Normally, regular sessions begin in early January and conclude in March, April or May.
But because of the pandemic, this is not a normal year. In June, legislators passed a resolution (requiring a two-thirds majority) to give them the authority to reconvene up until Oct. 10 to deal with coronavirus issues. Under the resolution, legislators could only return if the federal regulations changed on how the state could spend $1.25 billion in federal funds to combat the coronavirus.
Various leaders say regulations have changed, giving legislators the reason and the authority to re-convene.
Once they are in session, they could address the vetoes or other issues with a two-thirds vote to change their rules. But a key is the resolution only allows them to return for six days, though, that also could be changed once they are in session.
Regardless of whether Reeves will call legislators back in special session or they will return on their own, it is clear the veto of the education budget has stirred more contention and distrust between lawmakers and the governor.
The legislative and executive branch have been at odds this session – the first of Reeves’ gubernatorial term – on multiple issues, including who should have authority to spend the $1.25 billion in federal funds to whether the Legislature should remove the state flag, which includes the Confederate battle emblem in its design, without a vote of the people. On both of those issues, Reeves acquiesced.
Reeves maintained that he vetoed the education budget because legislators refused to fund the School Recognition Program, which provides merit bonuses to teachers and other certified staff in top performing and improving school districts.
“The governor did not have to veto that bill,” White said.
House Education Chair Richard Bennett, R-Long Beach, sent Reeves a letter promising that House and Senate leaders would send a letter to the Department of Education instructing them to fund the program and the department would be reimbursed for the expenditure in the new regular session in 2021.
But on the Gallo radio show, Reeves said, “I just can’t wait for a letter. I have to do what is right for those teachers. There is much evidence that it was not at all a mistake.”
Reeves questioned how it could have been “an oversight” not to fund the program since it was in the original legislation passed by the House and Senate, but was removed in the final days of the session by the legislative leadership.
“There was an error made,” Hosemann, the lieutenant governor, told Mississippi Today this week. “I appreciate the governor catching that, but vetoing a good bit of the budget was not the appropriate thing to do.”
Legislators say the funding was removed because they thought since state testing did not occur this past school year because of COVID-19 there would be no way to fund the program. The program funds are disbursed based on the schools’ accountability ratings, and since state testing did not happen there would be no way to determine who was entitled to the funds.
But after the education budget was passed, Bennett and other legislators said they learned the funds would be disbursed to teachers based on accountability results from the 2018-19 school year, meaning there was a method to determine who should receive the funds and a previous promise was made to provide the funds to teachers in the top schools and improving schools.
But not knowing in June the School Recognition Program was based on results from two years ago, legislators, facing difficult budget decisions caused by the pandemic, opted to transfer the Teacher Recognition Program funds (about $28 million) into the Mississippi Adequate Education Program. MAEP provides most of the state support for the basic operation of schools, such as teacher salaries and utilities costs.
Reeves maintains an official opinion issued by former Attorney General Jim Hood gives him the authority to provide funds to the school districts because the Constitution mandates a Mississippi public school system. That mandate, Hood reasoned, must be carried out with or without a legislative appropriation.
But educators have expressed concerns about the uncertainty of their budget situation. Various reports indicated that school districts began receiving payments from the state this week.
Whenever the Legislature returns, members also will have to decide whether to try to override a veto of a bill designed to provide the state Parole Board with more options to release inmates and whether to override a partial veto of a bill disbursing federal funds to health care providers to combat COVID-19.
Questions exist as to whether the partial veto of the health care bill is constitutional. The state constitution gives governors the authority to partially veto appropriations bills, but past rulings by the Mississippi Supreme Court have placed restrictions on that authority.
The Legislature left on July 1 with the intention of coming back because they could not agree on a budget for Marine Resources, which provides regulatory and law enforcement services in the Gulf of Mexico.
Two and a half years ago, a study published in Science Advances detailed how the gene editing tool CRISPR/Cas-9 repaired genetic mutations related to Duchenne Muscular Dystrophy (DMD). The study was a proof of concept, and used induced pluripotent stem cells (iPSCs).
But now a similar treatment has not only been administered to real people, it has worked and made a difference in their quality of life and the progression of their disorder. Nine boys aged 6 to 12 who have been living with DMD since birth received a gene therapy treatment from pharmaceutical giant Pfizer, and a year later, 7 of the boys show significant improvement in muscle strength and function.
Though the treatment’s positive results are limited to a small group, they’re an important breakthrough for gene therapy, and encouraging not just for muscular dystrophy but for many other genetic diseases that could soon see similar treatments developed.
About DMD
DMD is a genetic disorder that causes muscles to progressively degenerate and weaken. It’s caused by mutations in the gene that makes dystrophin, a protein that serves to rebuild and strengthen muscle fibers in skeletal and cardiac muscles. As the gene is carried on the X chromosome, the disorder primarily affects boys. Many people with DMD end up in wheelchairs, on respirators, or both, and while advances in cardiac and respiratory care have increased life expectancy into the early 30s, there’s no cure for the condition.
The Treatment
The gene therapy given to the nine boys by Pfizer was actually developed by a research team at the UNC Chapel Hill School of Medicine—and it took over 30 years.
The team was led by Jude Samulski, a longtime gene therapy researcher and professor of pharmacology at UNC. As a grad student in 1984, Samulski was part of the first team to clone an adeno-associated virus, which ended up becoming a leading method of gene delivery and thus crucial to gene therapy.
Adeno-associated viruses (AAVs) are small viruses whose genome is made up of single-stranded DNA. Like other viruses, AAVs can break through cells’ outer membranes—especially eye and muscle cells—get inside, and “infect” them (and their human hosts). But AAVs are non-pathogenic, meaning they don’t cause disease or harm; the bodies of most people treated with AAVs don’t launch an immune response, because their systems detect that the virus is harmless.
Samulski’s gene therapy treatment for DMD used an adeno-associated virus to carry a healthy copy of the dystrophin gene; the virus was injected into boys with DMD, broke into their muscle cells, and replaced their non-working gene.
Samulski said of the adeno-associated virus, “It’s a molecular FedEx truck. It carries a genetic payload and it’s delivering it to its target.” The company Samulski founded sold the DMD treatment to Pfizer in 2016 so as to scale it and make it accessible to more boys suffering from the condition.
It’s Working
A year after receiving the gene therapy, seven of nine boys are showing positive results. As reported by NPR, the first boy to be treated, a nine-year old from Connecticut, saw results that were not only dramatic, but fast. Before treatment he couldn’t walk up more than four stairs without needing to stop, but within three weeks of treatment he was able to run up the full flight of stairs. “I can run faster. I stand better. And I can walk […] more than two miles and I couldn’t do that before,” he said.
The muscle cells already lost to DMD won’t “grow back,” but the treatment appears to have restored normal function of the protein that fixes muscle fibers and helps them grow, meaning no further degeneration should take place.
It’s only been a year, we don’t yet know whether these treatments may have some sort of detrimental effect in the longer term, and the treatment itself can still be improved. But all of that considered, signs point to the DMD treatment being a big win for gene therapy.
Before it can be hailed as a resounding success, though, scientists feel that a more extensive trial of the therapy is needed, and are working to launch such a trial later this year.
We have all heard the saying that life is just the “hand we are dealt,” but is that completely accurate? Certainly, there is an element of truth to it because we cannot control all our circumstances (I know, hard pill for someone that is a control freak like me to handle). However, after that element is acknowledged, we can admit that it is up to us on how we “play” the hand we have been dealt. We can either victimize ourselves and throw a big pity party or we can choose to rise above it and become more than what the cards had first appeared to promise.
I think I realized this concept in my young adult life. I would listen to others complain and pitch in my own moaning of how unfair life was treating me. Wrapped up in a mentality of “woe is me” is actually pretty easy considering a large portion of society seems to cater to that pattern of thinking, without even realizing it is doing so. Look at how social media now offers an immediate soundboard for us to “air” all our frustrations the moment they happen. That can be even more dangerous because in the moment we might not think of the long-term consequences of telling the world our dirty laundry so to speak. When is the last time you sat in a group at your work and did not hear a pattern of sob stories on what all is going on in each person’s life: the boss is being hard, they had to work too many hours, their mom is acting a fool, their kid is breaking curfew, their marriage is crumbling and the list goes on. Sadly, we have not only learned to accept this without even being conscious of the fact it is happening, but we also contribute to it as well. Adding our own list of “slights” we feel need to be heard.
I do want to stop for a moment to admit that feeling ALL of our emotions is not only necessary, but emotionally healthy. So, we do need to feel our emotions around the events that are not so good, but once we feel them and acknowledge them…it is necessary to detach from them. Once we detach, we can shift our focus onto the things in life that need it the most. Finding that sweet balance can be hard as we begin to practice that. Often wanting to linger on the negative emotions can be tempting, but self-sabotaging nonetheless. Taking away our power to “play” the cards we have been dealt; we instead just accept them as they are and fold.
Shifting our focus on the good and positive things does not mean we are living in a bubble of absolute happiness. It means that when things happen, we acknowledge them, feel them if needed and accept the lesson that is being given to us as a positive constructive criticism handed straight to us from the universal way of life. Recently, I had some annual health testing done and the results were not what I wanted to hear. It meant I would need to shift. It meant things would need to be implemented. It meant that I would need to alter my thinking. Of course, I am human so the immediate response to the news was an overwhelming sense of emotions. The usual crying and despair that comes with hard news. As I sobbed to a friend, they gently reminded me I was stronger than any health issue. I had the power, but it was up to me to play the hand. Certainly, I have my days where discouragement seems to override my winning attitude towards life’s game of poker. However, the good days far outweigh the bad now. I learn to lean in and find my lesson. I learn to relish each day and the moments I am given. I learn to take life and make the most of the hand I am dealt. Thankfully, I am surrounded by friends who also uplift and choose to use life’s lessons as a ladder granted to us to level up in our playing field of life.
Next time you are tempted to linger at the pity party just a bit too long…put those shades on and remember the strong person you are. The one who has risen above all odds and fought to be where you are today. Remember that the game is not over until you fold and that power of playing falls on you.
It is best summed up by the famous words of Kenny Rogers: