Brigham Robst

Brigham Robst died because a drug that could have helped him was unavailable.

Brigham Robst

Brigham was born in 1983 with two underdeveloped kidneys, so he spent much of his childhood enduring treatments and surgeries.

Still, his father, Clarence, says, Brigham was a happy person. His medical condition seemed to make him years beyond his chronological age.

“My son was like a little old man because of his wisdon,” Clarence says.

He had an offbeat sense of humor that Clarence admits he didn’t always get.

Nevertheless, Brigham was adored by his family, whether he was sick or well.

Earlier this year, he was in the hospital with lymphoma when the doctors noticed fluid around his heart. They had to get rid of the fluid before Brigham could have a lifesaving bone marrow transplant, and they knew the one drug that could do it: Bleomycin.

But there’s a shortage of Bleomycin. Drug companies sometimes scale back or discontinue certain drugs because they are less profitable.

Clarence always will remember the horror he felt when Brigham’s doctor explained that his son couldn’t get the drug and that they would have to try a different drug that was less certain to work.

“I thought of things, I mean anything to help him get that medication, you know,  because I was told he couldn’t have it,” Clarence says. “I was thinking things  like, do I have to go to Canada to get this medicine?”

Where Bleomycin would have been infused with an IV, the new drug had to be injected directly into the chest.

“He said he thougt he was having a heart attack,” Clarence says.

Brigham Robst, a year before his death.

Because of his having had a kidney transplant, Brigham’s immune system was suppressed, and he got an infection, which proved fatal. He died Sept. 13. He was 28 years old.

Clarence believes his son would have lived if he could have gotten Bleomycin. He also believes greed was the cause of the so-called shortage.

Capt. Valerie Jensen of the US Food and Drug Administration said her agency  has tracked shortages for the last five  years, “and we’ve noticed a large increase in shortages which occurred in 2010 and  we’ve continued to see a large number of shortages in 2011.”

Jensen says the reasons vary from quality issues during manufacturing or  delivery to, “Often companies tell us when they discontinue these drugs its  because of a business decision. These drugs aren’t making as much money as new agents, so unfortunately, we  see fewer firms making them.”

Lawmakers in Washington D.C. are gathering information – and have proposed changes that might include requiring manufactures to notify the FDA when they  anticipate a shortage or stoppage.

“This was an executive decision,” Clarence says. “How some of these people go home and kiss their kids goodnight, I don’t know.”

But he adds, if Brigham’s death prompts government action that saves other lives, then he believes his son’s death won’t have been in vain.

To see a news report on Brigham’s story, visit http://www.abcactionnews.com/dpp/news/health/lawmakers-meet-to-discuss-critical-drug-shortages-that-are-hurting-patients

 

 

 

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It's official! We are WNC Health Advocates.
Please visit our new web site, Visit WNC Health Advocates
The new name reflects what we do -- advocate for health care for everyone and help people access and navigate our current health care system.
While we still hold onto the memory and the generous spirit of Mike Danforth, we need people to be able to see our name and understand who we are.

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We need your help now more than ever. Your tax-deductible donation will help us get Patient Pals and Family Friends to more people in need of peer support. Please consider a gift in honor or in memory of a loved one.
Donate here or mail your donation to Life o' Mike, PO Box 1213, Asheville, NC 28802.





Patient Pals & Family Friends

Life o' Mike has a peer support program for people with one or more serious or chronic medical issues or disabilities.

We aim to reduce isolation and fear among people who have conditions, including psychiatric illness, HIV/AIDS, diabetes, mild dementia or other cognitive disorder or disability, thereby reducing depression and complications as people learn to improve self-management of their medical conditions.

Patient Pals help alleviate feelings of isolation and frustration. They can help people develop a list of questions to ask the doctor and then accompany the person to the doctor to make sure all the questions are answered, taking notes to be sure the person understands the doctor’s answers.

Our trained volunteers also accompany their “Pals” to art exhibits, movies and walks outdoors, meet for coffee, call to check in and more.

Our Pals have experienced weight loss, improvement in diabetes, HIV, psoriasis, depression and more, just because they have someone who cares about them. Some relationships develop into longer-term friendships; other Pals move on to more independent lives.

Family Friends are there to help caregivers and other family members grow into their new role.

We need volunteers, who are asked to donate a minimum of one hour a week. Training is free and includes information on active listening, ways to help and when to know more help is needed.

And of course, we need funding.

To learn more, call Leslie Boyd at 828-243-6712 or e-mail lifeomike@gmail.com.

Life o’ Mike honors Joe Eblen


Life o' Mike presented its first Michael T. Danforth Community Service Award to Joe Eblen at a luncheon on June 8, in the Friendship Hall of First Congregational Church, 20 Oak St., Asheville.
Joe, seen here with Leslie Boyd, left, and his wife, Bobbie, has spent his life helping children and families, both as a coach and game official for more than 60 years, and as founder of Eblen Charities.

Start From Seed

Life o' Mike has a new program- Start from Seed (SFS).
SFS is a volunteer doula program aimed at providing non-medical, comprehensive support to low income, high-risk women and families of Buncombe County focusing on three areas:

1. We help new doulas with certification and training in return for their participation as a volunteer doula for SFS

2. We mentor volunteer doulas with their first few clients

3. Our volunteer doulas provide birth and postpartum doula services to low income, high risk moms, providing support and tools to empower them as a new parent.

A birth doula is a trained and experienced professional who provides continuous physical, emotional and informational support to the mother before, during and just after birth; a postpartum doula provides emotional and practical support during the postpartum period.

Start from Seed clients are referred to us from the Buncombe County Department of Health’s Nurse-Family Partnership Program, Western North Carolina Community Health Services, and Mission Hospital. The Program is intended and designed for growing clients’ inner strength and helping them gain empowerment to help them cope with the emotional, physical and mental challenges of childbirth, labor, and motherhood.

Our new moms and their infants have many needs. If you would like to help them get off to a good start, please visit our Start from Seed web site: Start from Seed, or call Program Director Chelsea Kouns at 804-814-9946.

Events in the community

Free birth and labor classes

Peaceful Beginning Doula Services holds free birth forums, Peaceful Birth, 6:30-8 p.m. the last Thursday of every month (except November) at Spa Materna, 640 Merrimon Ave., above The Hop, in Asheville.
All are welcome, expectant women and their partners are encouraged to attend anytime during their pregnancy. We also encourage doulas and other maternal/child professionals to attend and share in the discussions. The forums are "birth circle" style, focusing on normal birth which follows the Lamaze Six Care Practices for Healthy Birth. The forums are led by certified and experienced educators.

NAMI Family-to-Family Class

NAMI of Western Carolina holds 12-week classes for families and caregivers of individuals with a severe mental illness 6-8:30 p.m. Mondays at Charles George VA Medical Center, 1100 Tunnel Road in Asheville. The course covers major mental illnesses and self-care. Registration required. Info at 828-299-9596 or rohaus@charter.net.

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