Showing posts with label United States. Show all posts
Showing posts with label United States. Show all posts

Thursday, February 21, 2013

'Bubble Boy' Bill Passes Congress | Reduction

'Bubble Boy' Bill Passes Congress

World Aids Day, December 1
World Aids Day, December 1 by Sully Pixel
License (according to Flickr): Attribution-ShareAlike License
Excerpt:

If there's one thing Jenny Gardner is afraid of, it's hospitals. She has a primary immunodeficiency disease, also known as the "bubble boy" disease, which renders her body unable to combat the everyday viruses and germs that could lurk in hospital corridors. And, as fate would have it, Gardner has to go to a hospital every three or four weeks to get the treatment she needs to stay alive. "That's the last place in the whole world we need to be. That's where the germs are. That's where the sick people are," Gardner said. "There are some winters where I have pneumonia two or three times a year." Click here to find out the 10 worst things for the immune system.

Keywords:

primary immunodeficiency primary immunodeficiency diseases Immune Deficiency Foundation Gardner Medicare IVIG Access IVIG Access Act home treatment David Vetter primary immunodeficiency disease people home treatment Blaese three-year pilot program Dr. Michael Blaese Image Bank/Getty Images late David Vetter Rep. Kevin Brady Rep. Doris Matsui Carol Ann Demaret infusions Jenny Gardner intravenous infusions home infusions sick people hospital corridors bubble boy hospitals intravenous treatments everyday viruses worst things View Full Size blood donors infusion treatments medical director nurse administer Friday night United States rural areas infusion drugs President Obama late 30s Lamar Alexander health care financial issue congressional aides young families John Kerry rare disease associated costs

People:

Jenny Gardner

Overall Sentiment: -0.0503841

Relevance: 0.929066

SentimentQuote
-0.364054"That's the last place in the whole world we need to be. That's where the germs are. That's where the sick people are," Gardner said. ...
-0.318857"That's the last place in the whole world we need to be. That's where the germs are. That's where the sick people are," Gardner said. "There are some winters where I have pneumonia two or three times a year."
0.10362Gardner said has been calling congressional aides for years, hoping to convince them that people with primary immunodeficiency diseases need home treatment, but they often tell her the same thing: "You don't look sick."
-0.254521"We hate to hear that," Gardner said. ...
-0.21949"We hate to hear that," Gardner said. "I've been sick my whole life, and I'm 62 years old. … I missed a lot of school. My parents were actually investigated I missed so much school one year."
-0.0180257"I grieve for them, because not only do they have to deal with a very rare disease for their children, but then on the other hand, they have to fight the financial issue of what is covered and not covered," she said.
0.046458"I grieve for them, because not only do they have to deal with a very rare disease for their children, but then on the other hand, they have to fight the financial issue of what is covered and not covered," she said. "I don't think a young family with children should have to fight on both sides of the coin. Their fight should be for the child's well-being."
Sentiment Stats:
  • Number of Quotes: 7
  • Aggregate Sentiment: -1.0248697
  • Mean: -0.14640995714286
  • Standard Deviation: 1.7320508075689

Dr. Michael Blaese

Overall Sentiment: 0.0223843

Relevance: 0.552392

SentimentQuote
0.282757"It's very important for these individuals," said Dr. Michael Blaese, ...
0.0522657"It's very important for these individuals," said Dr. Michael Blaese, medical director of the Immune Deficiency Foundation. "If they don't get it, they get infected, and they die of pneumonia, meningitis, septicemia."
0"It used to drive me nuts," Blaese said. ...
0.483427"It used to drive me nuts," Blaese said. "There's nothing more disconcerting for a physician than to have a treatment that's effective for a patient, and then we can't get it to them."
-0.169397Blaese said the drug's occasional reactions, including headaches, back pain, nausea and a rare "shock-like" ...
Sentiment Stats:
  • Number of Quotes: 5
  • Aggregate Sentiment: 0.6490527
  • Mean: 0.12981054
  • Standard Deviation: 1.7320508075689

Rep. Kevin Brady

Overall Sentiment: 0

Relevance: 0.426625

SentimentQuote
0.0794626"I've been inspired by the courage of David Vetter and his mother, Carol Ann Demaret, who, as a leader in the Immune Deficiency Foundation, helped me understand how dangerous it is to send PIDD patients to hospitals and doctors' offices each month," Brady said ...
0.122589"I've been inspired by the courage of David Vetter and his mother, Carol Ann Demaret, who, as a leader in the Immune Deficiency Foundation, helped me understand how dangerous it is to send PIDD patients to hospitals and doctors' offices each month," Brady said in a statement. "For those most at risk, it's important that we continue to make health care more affordable and accessible."
Sentiment Stats:
  • Number of Quotes: 2
  • Aggregate Sentiment: 0.2020516
  • Mean: 0.1010258
  • Standard Deviation: 0
Disambiguation: Politician | U.S.CongresspersonReferences:

David Vetter

Overall Sentiment: 0.308736

Relevance: 0.406075

Obama

Overall Sentiment: 0

Relevance: 0.330024

Disambiguation: Politician | President | Appointer | AwardWinner | Celebrity | PoliticalAppointer | U.S.Congressperson | USPresident | TVActorReferences:

Lamar Alexander

Overall Sentiment: 0.108379

Relevance: 0.268922

Disambiguation: Politician | Senator | U.S.CongresspersonReferences:

Carol Ann Demaret

Overall Sentiment: 0.156344

Relevance: 0.258966

John Kerry

Overall Sentiment: 0.057062

Relevance: 0.25795

Rep. Doris Matsui, D-Calif.

Overall Sentiment: 0

Relevance: 0.253036

Key:

  • Aggregate Sentiment is meant to be an indicator of an individual's overall sentiment.
  • The Mean is meant to be an indicator of an individual's average comment sentiment.
  • The Standard Deviation, when there are enough quotes, will indicate an individual's consistency of sentiment (i.e. a Standard Deviation of 0 would mean they were very consistent in their sentiment and 1 would mean they were very inconsistent).

Note that quote stats are likely to be meaningless beyond the aggregate score due to the tiny sample size. However, they are always provided just in case you find something useful there.

Additional Info:

Organization: Immune Deficiency Foundation

Overall Sentiment: -0.0339408

Relevance: 0.597804

Organization: Congress

Overall Sentiment: 0.210901

Relevance: 0.403928

Disambiguation: Dedicator | GovernmentalBody | Legislature | NaturalOrCulturalPreservationAgencyReferences:

Organization: Medicare

Overall Sentiment: 0.123126

Relevance: 0.402154

Organization: House

Overall Sentiment: 0

Relevance: 0.33809

Organization: Senate

Overall Sentiment: 0.0370664

Relevance: 0.3062

Country: United States

Overall Sentiment: 0.151503

Relevance: 0.317781

Disambiguation: Location | Region | AdministrativeDivision | GovernmentalJurisdiction | FilmEditorReferences:

HealthCondition: pneumonia

Overall Sentiment: -0.355847

Relevance: 0.423389

Disambiguation: DiseaseOrMedicalCondition | CauseOfDeath | DiseaseCause | RiskFactor | Symptom | DiseaseReferences:
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Sunday, February 17, 2013

Young caregivers put life on hold | Synopsis

Young caregivers put life on hold

Sign in our sitting room: LOVE Makes A Family
Sign in our sitting room: LOVE Makes A Family by insidious_plots
License (according to Flickr): Attribution License
Excerpt:

(CNN) -- Kim Shifren came home from school one day to find her world turned upside down. Her mom had suffered a massive heart attack; doctors said she would need weeks to recover. In a matter of minutes, the 14-year-old went from child to child caregiver. Shifren spent the next month bathing, dressing and feeding her mom before school. When she got home, she cleaned the house and made dinner. Her dad helped when he could, but he worked long hours to support the family. Two years later, Shifren had to do it all again when her mom had another heart attack. And then again when a third heart attack hit two years after that. In between, Shifren tried to be a normal teen. But the time she spent living in fear of losing her mom had a lasting impact.

People:

Kim Shifren

Overall Sentiment: -0.0173808

Relevance: 0.828808

SentimentQuote
-0.180025"I felt that getting married and having kids just wouldn't be right, because I was so sure I would have early heart disease like my mom," said Shifren, ...
-0.053315"I felt that getting married and having kids just wouldn't be right, because I was so sure I would have early heart disease like my mom," said Shifren, now an associate professor of psychology at Towson University. "I didn't want to put a husband and children through that experience."
0.0302979"It isn't going to go away," Shifren said. ...
0.0406275"It isn't going to go away," Shifren said. "The issue will only get bigger."
Sentiment Stats:
  • Number of Quotes: 4
  • Aggregate Sentiment: -0.1624146
  • Mean: -0.04060365
  • Standard Deviation: 1.7320508075689

Carol Levine

Overall Sentiment: 0.0538941

Relevance: 0.729124

SentimentQuote
-0.0729935"People don't want to think of children providing care," Levine said. ...
-0.0625133"People don't want to think of children providing care," Levine said. "For whatever reason, it suits people not to see it."
-0.0732009"Kids don't want to be singled out," Levine said. ...
-0.37252"Kids don't want to be singled out," Levine said. "They're very afraid of being different. Being a caregiver is being different."
0"These are our children, and we should be able to do something for them," Levine said. ...
0"These are our children, and we should be able to do something for them," Levine said. "My guess is, it wouldn't take a whole lot to make a difference."
Sentiment Stats:
  • Number of Quotes: 6
  • Aggregate Sentiment: -0.5812277
  • Mean: -0.096871283333333
  • Standard Deviation: 1.7320508075689

Gail Hunt

Overall Sentiment: 0.0533053

Relevance: 0.484977

SentimentQuote
0"I think sometimes it's the forming of relationships," Hunt said. ...
-0.181578"I think sometimes it's the forming of relationships," Hunt said. "Something about that issue has made it difficult for them."
Sentiment Stats:
  • Number of Quotes: 2
  • Aggregate Sentiment: -0.181578
  • Mean: -0.090789
  • Standard Deviation: 1.7320508075689

Connie Siskowski

Overall Sentiment: 0.567809

Relevance: 0.311019

SentimentQuote
0.112305"These children suffer silently behind closed doors. ... They don't have the help and the support and the recognition that they need," Siskowski said. ...
Sentiment Stats:
  • Number of Quotes: 1
  • Aggregate Sentiment: 0.112305
  • Mean: 0.112305
  • Standard Deviation: 1.4142135623731

Alexa Wilson

Overall Sentiment: 0

Relevance: 0.213874

Brianna

Overall Sentiment: 0

Relevance: 0.199636

Key:

  • Aggregate Sentiment is meant to be an indicator of an individual's overall sentiment.
  • The Mean is meant to be an indicator of an individual's average comment sentiment.
  • The Standard Deviation, when there are enough quotes, will indicate an individual's consistency of sentiment (i.e. a Standard Deviation of 0 would mean they were very consistent in their sentiment and 1 would mean they were very inconsistent).

Note that quote stats are likely to be meaningless beyond the aggregate score due to the tiny sample size. However, they are always provided just in case you find something useful there.

Additional Info:

Country: United States

Overall Sentiment: 0.027186

Relevance: 0.351038

Disambiguation: Location | Region | AdministrativeDivision | GovernmentalJurisdiction | FilmEditorReferences:

Company: CNN

Overall Sentiment: 0.573616

Relevance: 0.372758

Organization: National Alliance for Caregiving

Overall Sentiment: -0.0390593

Relevance: 0.347179

HealthCondition: heart attack

Overall Sentiment: 0.0289819

Relevance: 0.404495

Disambiguation: DiseaseOrMedicalCondition | CauseOfDeath | RiskFactor | Symptom | DiseaseReferences:
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Wednesday, January 23, 2013

Vt. Mom Begs FDA: Save My Other Son | Essentials

Vt. Mom Begs FDA: Save My Other Son

Rare Diseases Take Spotlight in Annual Event
Rare Diseases Take Spotlight in Annual Event by The U.S. Food and Drug Administration
License (according to Flickr): United States Government Work
Excerpt:

Both her boys have Duchenne muscular dystrophy, but only her 10-year-old Max has access to a wonder drug that appears to be reversing the symptoms of this deadly disease. His 13-year-old brother Austin is languishing in a wheelchair while Max has been able to take the drug eteplirsen through a highly successful clinical trial. After 60 weeks on an IV infusion, Max was able to participate in a three-mile Halloween walk. "It's the first time ever -- he's never been able to walk that far. He's always gone with a wheelchair, even as a toddler," said McNary, 32. "He actually doesn't look like a Duchenne kid at all. And his balance is great." "People all over the world are calling it a miracle," she said of the drug.

People:

Austin

Overall Sentiment: -0.122599

Relevance: 0.843169

SentimentQuote
0"My brother says he's doing it for me, that he's trying really hard," Austin told ...
-0.028516"My brother says he's doing it for me, that he's trying really hard," Austin told ABCNews.com in August. "That's why he wanted to do it."
Sentiment Stats:
  • Number of Quotes: 2
  • Aggregate Sentiment: -0.028516
  • Mean: -0.014258
  • Standard Deviation: 1.7320508075689

Max

Overall Sentiment: 0.146993

Relevance: 0.60938

McNary

Overall Sentiment: 0.114472

Relevance: 0.567088

SentimentQuote
0"It's the first time ever -- he's never been able to walk that far. He's always gone with a wheelchair, even as a toddler," said McNary, ...
0.120372"It's the first time ever -- he's never been able to walk that far. He's always gone with a wheelchair, even as a toddler," said McNary, 32. "He actually doesn't look like a Duchenne kid at all. And his balance is great."
0"This has been a bitter-sweet journey for us," McNary wrote ...
0.0488875"This has been a bitter-sweet journey for us," McNary wrote in a letter to the FDA this week. "As we watch Max get better, we also watch his older brother, Austin, 13, get worse. He suffers, silently, as his disease progresses."
Sentiment Stats:
  • Number of Quotes: 4
  • Aggregate Sentiment: 0.1692595
  • Mean: 0.042314875
  • Standard Deviation: 0

Cure Duchenne

Overall Sentiment: 0.0964591

Relevance: 0.350396

Craig

Overall Sentiment: 0.271376

Relevance: 0.277758

Leclair

Overall Sentiment: 0

Relevance: 0.245133

Key:

  • Aggregate Sentiment is meant to be an indicator of an individual's overall sentiment.
  • The Mean is meant to be an indicator of an individual's average comment sentiment.
  • The Standard Deviation, when there are enough quotes, will indicate an individual's consistency of sentiment (i.e. a Standard Deviation of 0 would mean they were very consistent in their sentiment and 1 would mean they were very inconsistent).

Note that quote stats are likely to be meaningless beyond the aggregate score due to the tiny sample size. However, they are always provided just in case you find something useful there.

Additional Info:

HealthCondition: muscular dystrophy

Overall Sentiment: 0.0300408

Relevance: 0.593536

Organization: Food and Drug Administration

Overall Sentiment: 0.391463

Relevance: 0.487323

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Sunday, January 6, 2013

When drugs for depression fail, talking therapies help | Essentials

When drugs for depression fail, talking therapies help

Reprogramming Your Inner Child
Reprogramming Your Inner Child by Keoni Cabral
License (according to Flickr): Attribution License
Excerpt:

Patients with depression who fail to benefit from antidepressant drugs may do better if they are also treated with a type of "talking" psychotherapy called CBT, according to new research published on Friday. In the first large-scale trial to test the effectiveness of cognitive behavioral therapy, or CBT, alongside medication for depression, scientists said they found that the combination works where drug treatment alone fails. Nicola Wiles of Bristol University's school of social and community medicine, who led the study, said the findings underline the need to increase the availability of therapy for depressed patients. "While there have been initiatives to increase access to CBT in both the UK and Australia, worldwide initiatives are rare," she said in a statement. Wiles and colleagues recruited 469 adults from across Britain who had not responded to at least 6 weeks of treatment with an antidepressant.

People:

Nicola Wiles

Overall Sentiment: 0.152757

Relevance: 0.512236

SentimentQuote
0.012662"While there have been initiatives to increase access to CBT in both the UK and Australia, worldwide initiatives are rare," she said ...
Sentiment Stats:
  • Number of Quotes: 1
  • Aggregate Sentiment: 0.012662
  • Mean: 0.012662
  • Standard Deviation: 1.4142135623731

Willem Kuyken

Overall Sentiment: 0.0652732

Relevance: 0.207247

Key:

  • Aggregate Sentiment is meant to be an indicator of an individual's overall sentiment.
  • The Mean is meant to be an indicator of an individual's average comment sentiment.
  • The Standard Deviation, when there are enough quotes, will indicate an individual's consistency of sentiment (i.e. a Standard Deviation of 0 would mean they were very consistent in their sentiment and 1 would mean they were very inconsistent).

Note that quote stats are likely to be meaningless beyond the aggregate score due to the tiny sample size. However, they are always provided just in case you find something useful there.

Additional Info:

FieldTerminology: CBT

Overall Sentiment: 0.199663

Relevance: 0.982894

FieldTerminology: cognitive behavioral therapy

Overall Sentiment: -0.164131

Relevance: 0.364213

HealthCondition: depression

Overall Sentiment: 0.10356

Relevance: 0.555244

Disambiguation: DiseaseOrMedicalCondition | CauseOfDeath | RiskFactor | DiseaseReferences:
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Thursday, December 13, 2012

Resources for Darius Weems' Story | Essentials

Resources for Darius Weems' Story

Rare Diseases Take Spotlight in Annual Event
Rare Diseases Take Spotlight in Annual Event by The U.S. Food and Drug Administration
License (according to Flickr): United States Government Work
Excerpt:

"Nightline" profiled Darius Weems, a 23-year-old aspiring rapper who suffers from Duchenne Muscular Dystrophy, a rare genetic disorder that results in the disintegration of muscle tissue. We wanted to provide resources to our viewers who might be seeking more information about Darius's story, his cause and the disease DMD. 'Darius Goes West': At age 15, Darius and his friends took an extraordinary journey across the United States in a van built to accommodate his wheelchair. The trip became a documentary, "Dairus Goes West," which Logan Smalley directed and produced. The film, which was partly a coming of age story and partly a story of friendship and gratitude, has become a movement. Darius now travels to schools around the country to talk about DMD, and raises money for DMD research.

People:

Darius

Overall Sentiment: 0.248389

Relevance: 0.525094

SentimentQuote
0.105761'Darius Goes West': At age 15, Darius and his friends took an extraordinary journey across the United States ...
Sentiment Stats:
  • Number of Quotes: 1
  • Aggregate Sentiment: 0.105761
  • Mean: 0.105761
  • Standard Deviation: 1.4142135623731

Darius Weems

Overall Sentiment: 0.0610016

Relevance: 0.339221

Logan Smalley

Overall Sentiment: 0

Relevance: 0.205851

Nash

Overall Sentiment: 0

Relevance: 0.175851

Disambiguation: Athlete | AwardWinner | BasketballPlayer | OlympicAthlete | SportsLeagueAwardWinner | TVActorReferences:

Tom Wicka

Overall Sentiment: 0

Relevance: 0.137893

Angela

Overall Sentiment: 0

Relevance: 0.137496

Key:

  • Aggregate Sentiment is meant to be an indicator of an individual's overall sentiment.
  • The Mean is meant to be an indicator of an individual's average comment sentiment.
  • The Standard Deviation, when there are enough quotes, will indicate an individual's consistency of sentiment (i.e. a Standard Deviation of 0 would mean they were very consistent in their sentiment and 1 would mean they were very inconsistent).

Note that quote stats are likely to be meaningless beyond the aggregate score due to the tiny sample size. However, they are always provided just in case you find something useful there.

Additional Info:

Facility: Duchenne Muscular Dystrophy

Overall Sentiment: -0.0166121

Relevance: 0.908619

Organization: Kennedy Krieger Institute

Overall Sentiment: 0.0722102

Relevance: 0.309674

HealthCondition: muscular dystrophy

Overall Sentiment: 0

Relevance: 0.343879

Disambiguation: DiseaseOrMedicalCondition | CauseOfDeath | Disease | OrganizationSectorReferences:
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Monday, December 10, 2012

What do we know about mood disorders? | Synopsis

What do we know about mood disorders?

548 - Stippled QBert Texture
548 - Stippled QBert Texture by Patrick Hoesly
License (according to Flickr): Attribution License
Excerpt:

(CNN) -- Judging by the 5 a.m. call I got yesterday from a national news network, and from the barrage of in-print, online and televised discussion I saw as the day wore on, it is clear that the revelation that Rep. Jesse Jackson Jr. is being treated at a "residential treatment facility" for a mood disorder has raised far more questions than it has answered. The key issues in the media debate/discussion appear to be: What is a mood disorder, and would the treatment of a mood disorder really require prolonged treatment at a residential facility? Being told someone has a mood disorder is a little bit like learning someone has cancer. There is no such thing as "cancer," only specific types of cancer, which vary hugely from one another in location, symptoms and prognosis and need for treatment.

People:

Jesse Jackson Jr.

Overall Sentiment: 0.123512

Relevance: 0.25845

Pelosi

Overall Sentiment: 0

Relevance: 0.148543

Disambiguation: Politician | BoardMember | OfficeHolder | U.S.Congressperson | TVActorReferences:

Hitler

Overall Sentiment: -0.0697177

Relevance: 0.139962

Disambiguation: Politician | FilmProducer | MilitaryCommander | MilitaryPerson | PoliticalAppointer | FilmActor | TVActorReferences:

Michael Jackson

Overall Sentiment: 0

Relevance: 0.126134

Additional Info:

HealthCondition: mood disorders

Overall Sentiment: -0.179677

Relevance: 0.93565

HealthCondition: mood disorder

Overall Sentiment: -0.204829

Relevance: 0.390025

HealthCondition: bipolar disorder

Overall Sentiment: -0.401255

Relevance: 0.36119

Disambiguation: DiseaseOrMedicalCondition | DiseaseCause | DiseaseReferences:

HealthCondition: depressions

Overall Sentiment: -0.508266

Relevance: 0.312063

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