From Press Herald, BY BETTY ADAMS, KENNEBEC JOURNAL
WEST GARDINER — Terrence “Terry” Marks points to a picture that shows the kidney of a person with advanced polycystic kidney disease. Small cysts or blisters cover the exterior of the kidney, which is much larger than a normal kidney.
“That’s what my kidney looks like,” Marks said.
The disease, which runs in his family, has reached the stage where his kidney function was last rated at 16 percent — meaning it’s doing 16 percent of the work it should be doing to filter toxins from his system.
At 56, his immediate future holds transplant or dialysis, and the West Gardiner man has been preparing for both.
He’s also trying to figure out a way to help support himself and his wife while he gets treatment.
“How do you live and pay your bills?” Marks asked.
Marks was terminated from his state job in November 2015 because he was no longer physically able to perform his job after 19 years and 11 months as part of a state highway maintenance crew.
For a year, the family was OK financially because he had purchased income protection insurance, but that support ended in November 2016.
Now things are much tighter.
Marks has exhausted his bids to get disability retirement from the Maine Public Employees Retirement System, and an appeal of that final rejection is pending at court in Augusta, where oral arguments are set for 9:30 a.m. Feb. 6, 2018.
Marks is represented in the appeal by attorney Paul Aranson of South Portland; Assistant Attorney General Christopher Mann represents the state retirement system.
“I would advise people to get an attorney early on because it’s not a user-friendly system,” Aranson said on Wednesday. “You have to know what you’re doing.”
He said different rules apply in the state system.
“In Social Security disability system, if you’re disabled any time within five years of stopping work you have ‘insured status,’ so you’re eligible for benefits,” Aranson said. “In the state system you have to be totally unable to do your job the last day of your job.”
Data from MainePERS indicates that 82 of the 121 disability applications handled in 2016 were denied initially. It also shows that 23 of the 73 appeals were granted at the agency level. Marks’ appeal was denied, which is why he has gone to court.
Terrence Marks’ wife Tina said they have been to Social Security and were told Terrence Marks is ineligible for Social Security.
“He was born with this. We knew about this in his 30s; it never affected us until November of 2015,” Tina Marks said. “We have to pay our bills. We have to live between the time his kidneys start failing and the time if and when he gets a transplant and if and when he goes back to work. So how do we live between that time frame?”
She said he should be eligible to get at least some of the money he’s paid into the state retirement system.
Marks went to a legislative committee hearing in April to speak in favor of changing laws regarding state disability retirement benefits.
However, that bill died.
At that hearing, Sandy Matheson, executive director of MainePERS, noted that 1,300 of 38,500 retirement members were on disability; the others were on service retirement. Another 51,000 were actively paying into the plan.
She noted that members of MainePERS “experience varying levels of difficulty and frustration when applying for disability retirement.”
Specifically, Matheson said, the statute limits the MainePERS benefit to permanent disability.
“We know there’s a misperception of what our program is that really causes a lot of hardship and heartache for people,” Matheson told the committee.
State Sen. Shenna Bellows, D-Manchester, who has been trying to help Marks and his family, said Tuesday she tried to introduce another bill in September to fix the problem, but that move was rejected as well.
“I think MainePERS disability benefits should be available to people awaiting transplants,” Bellows said. “After more than a decade of service. I think it’s important they receive the benefits to which they’re entitled.”
She said it’s an issue she plans to pursue in the future if she is re-elected to represent District 14 in the state Senate.
“This is a situation that’s just heart-breaking,” Bellows said. “Any state worker who’s facing this type of thing should have that coverage.”
The Marks also have gone to other state and federal legislators for help. In the meantime, Marks is now getting much of his medical treatment at the Veterans Administration hospital at Togus, where several of his former nephrologists now work. He retired after 24 years in the military, the first four in the U.S. Army and the remainder in the Maine Army National Guard where he was a truck driver and later a heavy equipment mechanic. He’s hoping to be re-evaluated for veterans benefits as well.
Marks also tried to access a pension he had through a former employer, but learned he must wait until he reaches normal retirement age.
Tina Marks, an assistant clerk at the West Gardiner Town Office where she has worked for almost 20 years, carries the family’s medical insurance, but her $29,000 annual salary makes them ineligible for other forms of aid, including Supplemental Security Income.
At home, Tina Marks keeps a file folder full of medical bills. The family pays a little on each every month. On Dec. 21, Tina Marks estimated they had about $15,000 in outstanding medical bills. They’re still paying a Maine Health bill for $26,000, their share of the cost of an angiogram done a few years ago.
“We’ve always paid our bills,” Terrence Marks said.
Tina Marks said it would mean a great deal if her husband could get access to any one of the accounts which contain money that he earned.
Her husband lists the problems: “I’m too young for my military retirement,” he said. “I’m too young for my Social Security. I’m too young (for a pension) from a previous job I had for nine years, and I’m too young for Maine State Retirement; we’re fighting that one.”
In late December, Terrence Marks looked healthy, so much so that friends tell him, “Terry, you’re looking good.”
He has a ready response: “If I was in a car accident or sprained an ankle wearing a cast, you can physically see it,” he said. “You can’t see the decline in my kidney.”
He recalls a former supervisor telling him he looked good. He said he responded by pointing to the picture of the bad kidney and saying, “This is what my gnarly kidney looks like.”
The man told him he was surprised because he had not understood previously.
Now that Marks is on the Maine Transplant Program through Maine Health’s Maine Medical Center, he’s also looking for possible kidney donors. No one in the family is eligible because the disease is genetic.
A couple of potential donors match his blood type, and he’s quick to point out that his insurance company will pay for the testing and the transplant.
Terrence Marks’ father suffered from the disease as well and received a kidney transplant.
Marks said he has asked himself, “Am I going to be like my father?” who had a transplant in 1988 and had to take numerous anti-rejection medications for the remainder of his life. He died in December 2002 at age 69.
Marks said he has been told that protocols have changed a lot over the past 30 years. And he’s still hoping that one of those income sources will come through soon.
From Univadis, United Kingdom
The European Autosomal Dominant Polycystic Kidney Disease (ADPKD) Forum has urged a more holistic approach to the care of patients with ADPKD.
In a new position statement, published in Nephrology Dialysis Transplantation (NDT), the forum recommends that individuals with ADPKD be given access to lifelong, multidisciplinary, specialist and patient-centred care involving a holistic and comprehensive assessment of the manifestations, complications, prognosis, and impact of the disease on the patient and their family. It states that patients should have access to treatment to relieve symptoms, manage complications, preserve kidney function, lower the risk of cardiovascular disease, and maintain the quality of life. Information and support should also be accessible to help patients and their families to be fully informed and to be active partners in care.
“This position statement takes a holistic view of ADPKD – and this is what makes it so valuable. It puts the patients at the centre, not the disease," said Professor Denis Fouque, NDT 's editor-in-chief. “It is not about evaluating single treatment options and comparing outcome. Instead, it gives a full picture of the disease and explains what patients really expect from ADPKD therapy.”
From Island Post Gazette, British Columbia, Canada
The document includes present industry magnitude of Global Polycystic Kidney Disease Treatment and the movement since past 5-10 years. Moreover, the list of major companies/competitors is also present includingAngion Biomedica Corp , Aptevo Therapeutics Inc , Celgene Corp . The competition data allows users to gauge their current position against the market and take corrective measures to increase or maintain their share holds. Furthermore, details regarding the supply chain, manufacturers, distributors are also included in the report.
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Proper market environment investigation
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Past, current, and future magnitude of the market according to net worth and total capacity
Market shares of key competitors
Expert advice for executives to make an impact in the industry
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What is the expected industry size of Global Polycystic Kidney Disease Treatment market in 2022?
Expected rate of growth to reach the potential?
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Prominent distributors/suppliers in Global Polycystic Kidney Disease Treatment market?
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