Daily News for Neuros, Nurses & Savvy MSers: 208,152 Viewers, 8,368 Stories & Studies
Click Here For My Videos, Advice, Tips, Studies and Trials.
Timothy L. Vollmer, MD
Department of Neurology
University of Colorado Health Sciences Center Professor

Co-Director of the RMMSC at Anschutz Medical Center

Medical Director-Rocky Mountain MS Center
Click here to read my columns
Brian R. Apatoff, MD, PhD
Multiple Sclerosis Institute
Center for Neurological Disorders

Associate Professor Neurology and Neuroscience,

Weill Medical College of Cornell University

Clinical Attending in Neurology,
New York-Presbyterian Hospital
You'll get FREE Breaking News Alerts on new MS treatments as they are approved

HERE'S A FEW OF OUR 6000+ Facebook & MySpace FRIENDS
Timothy L. Vollmer M.D.
Department of Neurology
University of Colorado Health Sciences Center
Co-Director of the RMMSC at Anschutz Medical Center
Medical Director-Rocky Mountain MS Center

Click to view 1280 MS Walk photos!

"MS Can Not
Rob You of Joy"
"I'm an Mom has MS and we have a message for everyone."
- Jennifer Hartmark-Hill MD
Beverly Dean

"I've had MS for 2 years...this is the most important advice you'll ever hear."
"This is how I give myself a painless injection."
Heather Johnson

"A helpful tip for newly diagnosed MS patients."
"Important advice on choosing MS medication "
Joyce Moore

This page is powered by Blogger. Isn't yours?




Bea Burns has been bedridden for 17 years. She is 59, lives in Wakefield and has advanced multiple sclerosis.

She speaks in a whisper and clutches rolled up washcloths to keep her fingernails from gouging the palms of her hands.

Burns’s disease has left her totally dependent on others. Every day, a home-health aide comes to her bedside to feed her lunch and dinner. Every day, a visiting nurse comes to the house to bathe her and change her .

Fifteen years ago, Burns, a twice-divorced grandmother of four, had a pump implanted in her body to help control her pain and uncontrollable muscle spasms. At first, her brother would take her to Rhode Island Hospital whenever she needed her pump refilled.

But beginning in 2009, Burns could no longer ride in a car. Her Providence doctor arranged for her to get her pump refills at home, from a nurse employed by Pentec Health. The nurse would come to Burns’s bedside with medication for her pump, a concoction that would be mixed the day before in Pentec’s pharmacy in Pennsylvania. Pentec provided the service for free.

But for the past 11 months, Burns has been unable to get in-home service on her pain pump. Whenever she needs a pump refill or recalibration, she has to be carried out of her home on a stretcher and taken by ambulance to Rhode Island Hospital.

That’s because the state Department of Health told Pentec Health that until it obtained a home nursing care provider’s license, it cannot treat patients in Rhode Island homes.

Since January, Pentec spent about $100,000 trying to get state approval for its service. Three hearings were held. But after waiting for seven months for a decision, Pentac decided to cut its losses. It withdrew its request for licensure, leaving critically ill Rhode Island patients with implanted pain pumps with no alternative for in-home service.

I found out about this situation after my husband, Doane Hulick, died of lung cancer last fall. During the last seven months of his life, Pentec nurses came to our house 17 times to refill and recalibrate his implanted pain pump. At first, the visits were every 59 days. In the end, nurse Kelly Florentino was coming weekly, sometimes more often, working under the directive of my husband’s Boston pain-management doctor, Sanjeet Narang of Brigham & Women’s Hospital. My husband was on hospice but hospice nurses are not trained to service internal pain pumps.

Four days before Doane died, Kelly made her 18th and final visit to him –– at the Philip Hulitar hospice center. Without the refill, he would have gone into withdrawal.

If Doane had lived just one more week, we would have had to move to Massachusetts for end-of-life care. He would not have had the option of dying in a state where we’d shared a home for almost a quarter of a century –– or at the fine hospice facility here in Providence.

Pentec Health is authorized to provide in-home nursing services in 28 states, including Massachusetts. Since 2009, at the request of Boston and Providence doctors, it had been seeing a handful of severely ill patients in Rhode Island. The nurse who was treating home-bound patients here is a native Rhode Islander with a Rhode Island nursing license. Pentec Health also has a Rhode Island pharmacy license.

But Rhode Island requires more than that. Health officials told Pentec it had to get a certificate of need and offer proof that its service was wanted, affordable and safe. It would also have to open a Rhode Island office –– which it did, at the cost of $1,000 a month, even though no patients would ever be seen there.

In the end, Pentec decided it is just too hard to do its humanitarian business here. “There was seemingly no end to this process,’’ says Pentec executive vice president Michael Abens. “They made us feel like criminals,” he said of those reviewing the application. It was evident that “we were not welcome here.”

About 425 people in Rhode Island have internal pain pumps. Many of them may someday require in-home service.

Former Pentec patient Vianna Hurley, a 44-year-old Coventry woman who suffers from chronic and acute pancreatitis, now has to get her husband to drive her to Boston every 14 to 20 days to get her pump refilled.

Last Tuesday, Hurley’s trip to Boston took 5½ hours.

Go to Newer News Go to Older News