CDC needs to break silence on gun violence, say African American health officials

— As an African-American man, Dr. Georges Benjamin says he feels like “an endangered species,” due to gun violence claiming the lives of men his color disproportionately to their numbers.

Benjamin is executive director of the American Public Health Association, and he has a message for the nation’s top public health official, Dr. Thomas Frieden, director of the Centers for Disease Control: Stop your silence on guns.

Frieden has spoken, written and tweeted prolifically on a wide range of health and safety issues during his six-year tenure at the CDC, but he’s kept deafeningly silent on the issue of gun violence, the second-biggest killer of young people in the United States.

His supporters call Frieden’s silence a wise course of action, as powerful members of Congress aligned with the National Rifle Association may take away hundreds of millions of dollars in CDC funding if he utters even one word that could be construed as supporting gun control.

But after explosive levels of gun violence in U.S. cities — more than 2,000 victims this year in Chicago alone — as well as the recent mass shootings in Orlando and Dallas, African-American public health leaders are coming forward to say Frieden should change course. They believe he could help save lives if he steps up and highlights the dangers of gun violence.

“It’s time to speak up,” Benjamin said. “The CDC is a trusted organization, and the white coat is a very powerful tool.”

Benjamin and others say if Frieden broke his silence, it could encourage state and federal legislators to pass measures to decrease gun violence. Perhaps Congress would even give CDC money to study ways to prevent the violence — funding that was taken away more than 20 years ago.

“Tom Frieden has a platform, and he needs to use that platform,” said Dr. Swannie Jett, president of the National Association of County and City Health Officials.

Through a spokeswoman, Frieden declined to comment for this article.

Divided by race

As with many issues in the United States, black and white people experience gun violence very differently.

According to an analysis of CDC data done by Columbia University researchers, black Americans are more than twice as likely to die from gun violence than white Americans. Between 2000 and 2010, the death rate from firearm-related injuries was more than 18.5 per 100,000 for blacks, and nine per 100,000 for whites.

Several African-American public health leaders interviewed by CNN drew a parallel between Frieden’s silence on guns and President Ronald Reagan’s silence on AIDS in the 1980s as the disease killed tens of thousands of gay men.

“I’m sure [Frieden] values African-American lives and the African-American community, but I think there’s real damage in not taking a stand and effectively using his platform to reduce gun violence,” Jett said.

“[Frieden’s] silence really sends a negative message in terms of how one values human lives,” added Lovell Jones, executive director of the Health Disparities, Education, Awareneess, Research and Training Consortium, who recently wrote about gun violence and the value of black lives.

Many public health leaders who are not African-American, however, are reluctant to criticize Frieden for his silence.

By contrast, the U.S. Surgeon General, Dr. Vivek Murthy, has spoken out about gun violence, but he doesn’t have the kind of bully pulpit that Frieden has — Murthy’s position is far less influential and his office has a relatively tiny budget.

“Tom is a friend and a colleague and working on a lot of important issues, like Zika funding,” Dr. Murthy said. “Each public health leader makes a decision about how they’ll prioritize public health crises.”

Dr. Leana Wen, Baltimore’s health commissioner, has spoken out about gun violence, but said she understands that Frieden, who heads up a high-profile federal agency with a multi-billion dollar budget, is in a different position.

“I can’t even pretend to know the pressures that Dr. Frieden is under,” she said.

Dr. Sandro Galea, dean of the Boston University School of Public Health, is coauthor of the Columbia study on race and guns and recently wrote an article entitled “Too many dead: The need to reframe gun violence as a public health issue.”

Galea said it would help if Frieden lent his voice to the discussion, but understands why he doesn’t.

“I well appreciate the political pressures that CDC must be facing on this issue and see CDC’s not speaking out [as] more a reflection of the extraordinary success of special-interest groups who hold our political discussion hostage around guns, than I see it as a shortcoming of CDC,” Galea wrote in an email to CNN.

CDC chased by “ghosts”?

That pressure from special interest groups — namely, the National Rifle Association — is at the heart of the experts’ disagreement about whether Frieden should speak up or stay silent.

Congress has already taken away nearly all CDC funding for gun research. Such research “is fundamental to understanding the problem and developing scientifically sound solutions,” according to a statement sent to CNN by CDC spokeswoman Erin Sykes.

Frieden’s supporters say if he speaks up, Congress might shut down the entire CDC National Injury Prevention and Control Center. It’s not a groundless idea — a small group of lawmakers threatened to do just that in the 1990s, but their efforts ultimately failed.

Black public health leaders question whether the CDC really needs to fear that Congress would shut down the Injury Prevention and Control Center, which funds research on car accidents, child abuse, prescription drug overdoses and other public health concerns.

“There’s a ghost there, but I’m not sure it’s real,” Benjamin said, referring to the threat from more than 20 years ago.

And Jones agreed. “Dr. Frieden needs to call their bluff.”

The leaders believe the good that might come from Frieden speaking up outweighs the risk that may or may not exist.

“We can’t stop because of fear,” said Apryl Jones, president of the American Public Health Association’s Black Caucus of Health Workers. For her, the issue is more than theoretical.

“I’m a member of the AME (African Methodist Episcopal) church, and when our sister church in South Carolina was hit last year, my ministers knew their ministers. They were friends, and it gets intimate when your friends are hit,” she said.

“When you see your community affected and you’re the one in position to speak up and take action, that’s when it hits home.”

Insurance won’t pay for women to have pleasurable sex

— Michelle Weber says that when her boyfriend wanted to take Viagra, his insurance paid for it, no questions asked.

So when she wanted to take the new “female Viagra” for her sexual problems, she figured that would go smoothly, as well.

But it didn’t.

Her insurance company refused to pay for the drug, called Addyi, saying she’d have to see a psychiatrist first.

“They don’t tell men who want Viagra that they have to see a psychiatrist,” said Weber, 38, who asked that her real name not be used, in order to protect her and her boyfriend’s privacy.

Indeed, they don’t, say doctors who treat sexual dysfunction.

And these doctors say the psychiatrist requirement is just one of many “barriers” that insurance companies have put in place for women, but not men, who are seeking drugs to treat sexual problems.

“It’s a huge double standard,” said Weber’s gynecologist, Dr. Tami Rowen, an assistant professor of obstetrics and gynecology at the University of California-San Francisco.

Dr. Irwin Goldstein, a sexual health specialist in San Diego for both men and women, said insurance companies have routinely rejected his prescriptions for Addyi, but that’s never been the case for Viagra.

“It’s startling. It’s so sexist,” said Goldstein, the president of the International Society for the Study of Women’s Sexual Health, who has been a paid consultant to the pharmaceutical companies that make both Addyi and Viagra.

Three reasons company won’t pay for ‘female Viagra’

In addition to the psychiatrist requirement, Weber’s insurance company, Blue Shield of California, refuses to pay for Addyi unless a woman first tries another, less expensive drug, according to the company’s prescribing guidelines.

That less expensive drug isn’t approved to treat sexual problems and can have devastating side effects.

Blue Shield gave Weber a third reason it wouldn’t pay for Addyi, according to a letter it wrote her. The company said it wouldn’t pay because her low libido appeared to be a side effect of a medication she’s taking.

Weber said Blue Shield must have been referring to the only drug she takes: a type of antidepressant known to have sexual side effects for both men and women.

But she said she suffered from low libido even when she wasn’t on an antidepressant.

“And I’d love to know, do they tell men they can’t have Viagra because they’re on antidepressants?” she asked.

CNN sent Clinton McGue, a Blue Shield of California spokesman, an email with this question. He responded that “without knowledge of the member’s detailed history or the case,” he could not provide more of a response.

When asked about the Addyi denials, a spokeswoman for the insurance industry responded that some studies have shown Addyi isn’t very effective and can have side effects.

“If there’s a question mark around a coverage decision, that usually means there’s a question mark around the efficacy,” said Clare Krusing, a spokeswoman for America’s Health Insurance Plans. “This drug failed two FDA reviews prior to being approved, and the reason it got approved the third time is because of a broad PR campaign by the company that makes it.”

That explanation doesn’t sit well with doctors who treat sexual dysfunction. They say the FDA ruled last year that Addyi, which is taken every day, is safe and effective. The doctors add that the drug doesn’t work for all women, but it certainly works for some.

“I think women in general should be alarmed. Insurance companies are covering things for men that they’re not covering for women,” said Dr. Alyse Kelly-Jones, a gynecologist in North Carolina.

Doctors: Insurance refuses to pay for other female sex drugs, too

Doctors said the “double standard” they see for women with sexual problems manifests in other ways, too.

They said insurance typically pays for their older male patients to take testosterone to boost their sagging sex lives. But when older women want treatments for vaginal dryness and atrophy, insurance companies usually balk.

Krusing disagreed, saying major insurance companies do cover such treatments.

But gynecologists cite denial after denial for such drugs.

Dr. Laura Hirshbein, associate professor of psychiatry at the University of Michigan, said she’s dismayed but not surprised that insurance companies are often refusing to pay to treat women with sexual problems.

Hirshbein, who studies issues of gender, sex and psychiatry, said men with erectile dysfunction get a multitude of treatment options, which are often celebrated in giant advertising campaigns.

“Men get told they can expect to function sexually and can expect to easily get whatever they need in order to do that,” Hirshbein said.

But she said that historically, women have been told that if they have sexual problems, they must be mentally ill.

“Women are told it’s all in their head,” she added.

$1,000 a month to attempt pleasurable sex

In March, when Weber received her Addyi prescription from her gynecologist, she unsuspectingly headed to the pharmacy to fill it.

The pharmacist came back with the news: Her insurance company wouldn’t pay for it. She could pay for it herself — to the tune of $1,000 a month.

No, thank you, Weber said, and walked out empty-handed.

Blue Shield’s McGue said in a statement that “a committee of external pharmacists and physicians, including psychiatrists, review the medical evidence for prescription medication to determine Blue Shield’s coverage policy,” he wrote. “The committee determined that Hypoactive sexual desire disorder is best diagnosed after a psychiatric evaluation.”

But doctors said other specialists, such as gynecologists and sexual health experts, have the training and experience to identify and treat sexual problems, not psychiatrists.

“I’m a sexual health expert. This is my niche,” said Rowen, Weber’s gynecologist. “And they’re telling me I can’t diagnose a sexual disorder? That’s crazy.”

Hirshbein, the psychiatrist at the University of Michigan, agreed. She said that when her patients suffer from sexual dysfunction, she sends them to doctors who have more experience in that area.

“I’m a psychiatrist. I wouldn’t write a prescription for [Addyi], in the same way I wouldn’t write a prescription for Viagra,” she said.

The side effects of ‘female Viagra’

In his statement, McGue also mentioned “the serious safety concerns associated with Addyi [which] include adverse effects of the central nervous system.”

Addyi has a “black box warning” highlighting the increased risk of low blood pressure and fainting when combined with certain other drugs or with alcohol.

The less expensive drug that Blue Shield requires women try before taking Addyi has a black box warning of its own.

Bupropion, also known as Wellbutrin, has a warning highlighting the risk of developing “serious neuropsychiatric symptoms,” including suicidal thoughts.

“That makes no sense,” said Kelly-Jones, the gynecologist in North Carolina. “For Wellbutrin to be considered first-line therapy for something it’s not FDA-approved to treat, that’s concerning.”

Low libido taking a toll

Since getting the rejection from Blue Shield in March, Weber has been on a mission.

She did get a prescription from a psychiatrist and marched it into the pharmacy a few weeks ago.

The pharmacist came back with more news: Blue Shield had rejected it again, saying she needed more documentation from the psychiatrist.

Weber calls the whole situation ironic.

Her boyfriend doesn’t need Viagra, she says. He can have sex without it. He wants it so he can have longer-lasting erections, hoping that might make her happier.

“I’m the one with the actual disorder. I’m the one with no sex drive at all. But he’s the one who walks out of the doctor’s office with a prescription that he can actually fill,” she said.

As she tries to increase her libido — she sees a certified sexologist for help — she hopes her relationship will survive.

She explains to her boyfriend that she doesn’t know why she has a low libido, but she knows it has nothing to do with him or his sexual performance.

Even with the reassurances, she’s not sure their relationship will survive her lack of interest in sex.

“We’re thinking about getting married. It’s really serious. But a big piece of it isn’t working, and that’s hard for both of us,” she said.

Heaven over hospital: 5-year-old Julianna Snow dies on her terms

— Julianna Snow, the 5-year-old girl who sparked an international conversation about wrenchingly difficult decisions for terminally ill children, died Tuesday.

“Our sweet Julianna went to heaven today,” her mother, Dr. Michelle Moon, wrote on a blog devoted to her daughter. “I am stunned and heartbroken, but also thankful. I feel like the luckiest mom in the world, for God somehow entrusted me with this glorious child, and we got almost six years together.”

Julianna was born with an incurable neuromuscular disease. CNN’s story about her last year documented how Moon and her husband, Steve Snow, consulted with their daughter about whether she would want to go to the hospital if she were to have a potentially fatal complication.

The other choice was to forgo care and go to heaven. Julianna chose heaven, and her parents, in consultation with Julianna’s doctors, abided by her decision.

That decision — heaven over hospital — started a conversation about what kind of care a child with a potentially deadly disease should receive, and whether the child herself should be consulted in the decision making.

“She was a remarkable little girl,” said Art Caplan, director of the division of medical ethics at New York University School of Medicine.

“She taught me and others that even a child can become very knowledgeable about a challenging illness and can convey thoughtful and remarkable feelings about her illness and her ideas.”

Julianna’s story

When she was 2 years old, Julianna was diagnosed with Charcot-Marie-Tooth disease, a neurodegenerative illness.

By the time she was 4, she’d lost the use of her arms and legs. Her swallowing muscles were so weak, she had to be fed through a tube in her stomach. Her breathing muscles suffered too, and she was in and out of Doernbecher Children’s Hospital in Portland, Oregon.

But her mind worked perfectly.

That’s why her parents consulted Julianna, then only 4 years old, when doctors at Doernbecher told them they would have to make some very difficult medical decisions.

The doctors explained to Moon, a neurologist, and Snow, an Air Force fighter pilot, that they should consider what they wanted to do the next time an infection made it difficult for their daughter to breathe.

Did they want to bring her back to the hospital? The doctors said there was a reasonable chance Julianna would die there after being subjected to painful procedures. Even if she lived, they said, it would probably be for a short time, and she’d probably be sedated, unable to think and talk.

There was no right answer, the doctors told them.

Early last year, Moon asked Julianna what she wanted to do and wrote about the conversation on her blog.

Michelle: Julianna, if you get sick again, do you want to go to the hospital again or stay home?

Julianna: Not the hospital.

Michelle: Even if that means that you will go to heaven if you stay home?

Julianna: Yes.

Michelle: And you know that mommy and daddy won’t come with you right away? You’ll go by yourself first.

Julianna: Don’t worry. God will take care of me.

Michelle: And if you go to the hospital, it may help you get better and let you come home again and spend more time with us. I need to make sure that you understand that. Hospital may let you have more time with mommy and daddy.

Julianna: I understand.

Michelle: (crying) — I’m sorry, Julianna. I know you don’t like it when I cry. It’s just that I will miss you so much.

Julianna: That’s OK. God will take care of me. He’s in my heart.

Julianna was in hospice for the last 18 months of her life.

During that time, she loved to wear princess dresses, make up elaborate stories and games, do arts and crafts projects with hospice volunteers, and have her toenails painted.

In a text to CNN, Moon said the end was very quick.

“She got sick very suddenly and it was back to the same battle of helping her breathe,” she wrote. “This time, she didn’t bounce back — she got worse and worse and worse and was gone in just over 24 [hours].

“We had the full support of hospice and we had the things we needed to keep her comfortable. She died at home, in her princess room and in my arms. I don’t know that she would have wanted it any other way.”

Julianna’s legacy

Julianna’s story touched millions of people. After CNN’s story, People magazine wrote a multipart series about her, and the Korean Broadcasting System — Moon is Korean — traveled to her home in Washington state to do a Christmas Day documentary about her and her family.

Most readers and viewers voiced support for the family’s decision, although some people with neuromuscular disabilities disapproved and started a Facebook campaign called “Dear Julianna.”

In her blog, Moon wrote that she wants the world to remember Julianna as the “bright light” who “loved love and ‘everyone except the bad guys.’ “

“Please do not forget her,” Moon wrote. “She lived, she was real, and she mattered.”

“Her mind was always going. She took us to a beautiful place without limits,” she added. “She encouraged us to be our most colorful and fabulous self.”

In the end, Julianna got her wish to die without medical interventions.

“She fought hard to be here, harder than I’ve seen anyone fight, with a body that was too frail for this world. She was so brave — and I hated that she had to be so brave,” Moon wrote.

“Today she is free. Our sweet Julianna is finally free.”

Heaven over hospital: 5-year-old changes the conversation about death

— When Stephanie Hunter had to withdraw life support from her mother, her friends and family understood. They expressed their condolences, said she’d made the right decision, and some even shared stories about the tortured choices they had made for their own dying parents.

But four years later, when she and her husband had to make a similar decision for their terminally ill baby, that support disappeared. No one understood. Family and friends said the Hunters were killing their child.

That’s why Stephanie and her husband, Justin, have remained quiet about the death since it occurred three years ago. “They made us feel so ashamed,” she said.

But last week that ended. Stephanie said a CNN story about a family’s decision for their terminally ill 5-year-old was an important first step in changing the way people think about end-of-life decisions for terminally ill children. Now, she says, the shame is starting to disappear, the taboo starting to fade.

“I am so thankful for your (family’s) unbelievable bravery and strength in telling and standing by the decision your family has made,” she wrote in response to a blog written by the mother of the 5-year-old girl, Julianna Snow.

‘We felt so alone’

When Wyatt Hunter was a week old, blood clots burst in his brain. Doctors told the Hunters that he would be in severe pain the rest of his life — pain that not even around-the-clock morphine would erase. He would never be able to do anything more than breathe on his own. He wouldn’t be able to blink his eyes, let alone walk or talk.

The Hunters didn’t want their son to live that way, so they made a decision no parent should ever have to make: They decided to withhold nutrition from Wyatt.

His doctors supported that decision, but some close friends and relatives told them they were starving their baby. Stephanie’s grandmother threatened to come to the hospital and feed Wyatt when the parents were out of his room.

Wyatt died two weeks later.

“We knew it was the right decision. Our doctors told us it was the right decision. But we felt so alone,” Stephanie remembers.

That’s how Julianna Snow’s parents felt. When organizations such as the National Institutes of Health talk about end-of-life decisions, it’s about adults. While there are a few notable exceptions, such as the Courageous Parents Network and the Conversation Project, not many places talk about end-of-life care for dying children.

Julianna has an incurable neuromuscular disorder, and the next time she gets a cold, her body will be too weak to fight it off. The hospital likely won’t be able to save her — but even if it could, she would likely face a terrible quality of life.

Her parents, Steve Snow and Michelle Moon, asked her if she wanted to go to the hospital the next time she got a cold. She chose heaven, and they say they’ll abide by her wishes to die at home.

Following the story’s publication last week, most people have been supportive of the Snow family, but there have been critics.

“The parent’s should go to prison for death row (for) letting their child kill herself,” wrote one Facebook user.

Stephanie Hunter, who’s been silent all these years, spoke up online to defend the Snow family against these critics.

“How can those who judge be so hurtful with their words when they admittedly have never walked in the shoes of families like you, like me,” she wrote on Michelle Moon’s blog.

The executive director of the Courageous Parents Network, Blyth Lord, who lost her own daughter in 2001, said she wishes people were less judgmental of the Snow family and others who find themselves having to make horrific decisions no parent should ever have to make.

“It is clear how beautifully they parent and love their daughter amidst the most heartbreaking of stories,” Lord wrote in an email to CNN. “It is not for anyone else to AGREE or DISAGREE with their choice, but only to say that we know they are being the best parents that Julianna could have.”

A search for a mystery gene

Much of the negative response to Julianna’s story has come from people living with neuromuscular diseases. Some of them started a Facebook group called “Dear Julianna” where they tell Julianna that if she keeps fighting, she can live a fruitful life just as they do.

“There’s a ton of us out there who have experienced what she’s going through. We’re all confident with support and medical technology she can get through this,” said Emily Wolinsky, one of the page’s founders, who has muscular dystrophy.

But Dr. Michael Shy, director of the division of neuromuscular diseases at the University of Iowa Carver College of Medicine, said no one has experienced exactly what Julianna is going through. Wolinsky and many of the others don’t even have the same disease Julianna has, he said.

And even if the little girl did have the same disease as the “Dear Julianna” writers, he said, it would be impossible to compare their lives, since there are so many variations even within one disease. For example, there are 83 different genes known to cause the illness Julianna has, called Charcot-Marie-Tooth disease, and each gene causes a different version of the disease.

Doctors don’t even know what bad gene Julianna has. They’ve tried for years to figure it out, but to no avail.

After the CNN story, the Charcot-Marie-Tooth Association donated $6,000 to use new technology to do whole-genome sequencing on Julianna and her parents. Dr. Stephan Zuchner, a professor of genetics and neurology at the University of Miami Miller School of Medicine, said there’s a 30% to 50% chance they’ll be able to find the culprit gene in Julianna’s case. He said they should know in a few weeks.

But even if they are successful, Julianna’s parents know it’s unlikely it will help their daughter. Pinpointing the gene is just the first step. Several CMT genes were found in the early 1990s and there is still no treatment available.

Even with no cure in sight, Julianna is living life to the fullest, dressing up as a princess, singing songs from “Frozen” and enjoying a stream of visitors.

This week, Moon wrote about how she asked her husband six months ago if he thought it was a good idea to go public with their story. He said yes.

“Julianna is a bright light,” Snow told his wife. “Maybe she has something to teach the world.”

Learning from Angelina Jolie’s genetic testing for our own health

— You may be more like Angelina Jolie than you think.

No, you’re not a movie star and you probably don’t have six children and you’re certainly not married to Brad Pitt, but given the pace of scientific advances, you may, like Jolie, be getting a genetic test at some point in your life.

Such testing is available for many more diseases than the two Jolie tested for: breast and ovarian cancer. There’s genetic testing for a host of other cancers, such as colon, endometrial, and pancreatic, as well as for autism and some forms of heart disease, even Alzheimer’s and Parkinson’s diseases.

In all, there are 26,000 genetic tests available for 5,400 conditions, according to the NIH Genetic Testing Registry.

“And that list is growing fast. Like rocket ship fast,” says Art Caplan, a medical ethicist at New York University.

But it’s important to do genetic testing right, because it’s easy to goof. You can easily get the wrong test, or miss the right one, or misinterpret the results.

Since there’s a reasonably good chance genetic testing is in your future, here’s what you need to know.

Don’t go online. Don’t go to your family doctor. Go to a genetic counselor.

Dr. Otis Brawley, the chief medical officer of the American Cancer Society, tells the story of a patient with a family history of breast cancer who went to her family doctor specifically asking for testing for breast cancer, or BRCA genes.

The doctor complied, and the BRCA test was negative. The woman went on about her life. Then ten years later, she was diagnosed with cancer.

She was then sent her to a genetic counselor, who told the woman that her family doctor had goofed. In addition to BRCA testing, she should have been tested for other genes linked to breast cancer. The woman had that testing, and it turned out she had a mutation in a gene called PTEN. If she’d known ten years earlier, she might have been able to prevent her cancer.

Your family doctor simply doesn’t know as much about genetic testing as a genetic counselor does. Plus, a counselor will spend an hour or even more with you on the initial consultation to get it right. Family doctors typically don’t have that kind of time.

The National Society of Genetic Counselors has an online search tool to find a counselor near you. If none are convenient, you can get help online and by phone from a counselor at Informed DNA.

Make sure you really need genetic testing

Don’t get tested just because you’re curious about your genes. That can lead you down a rabbit hole, because sometimes these tests come up with results that are inconclusive or meaningless and you’ll spend the rest of your life worrying about them.

Experts recommend only getting testing when you have a family history of a certain disease. Jolie’s mother, sister, and aunt had ovarian cancer, for example, so it was prudent of her test for it.

The American Cancer Society has guidelines for who should receive genetic testing.

If you need it, genetic testing may not be as expensive as you think

When Jolie published her op-ed Tuesday in the New York Times, some scoffed that being a wealthy woman, she had access to testing that the rest of us might not have.

But that’s just not true.

The first step, talking to a genetic counselor, is not terribly expensive. A consultation costs about $150 to $300.

If you can’t afford that, genetic counselors will often work with you to bring the price down, according to Joy Larsen Haidley, the president of the National Society of Genetic Counselors.

If you’re specifically concerned about breast or ovarian cancer, call a group called FORCE at 1-866-288-7475 and they’ll get you on the phone with a genetic counselor for free.

The price for the testing itself has come down recently, especially for breast and ovarian cancer, since two years ago the Supreme Court broke up a monopoly on such testing. Obamacare requires insurance plans that began on or after August 1, 2012, to cover genetic testing when it’s recommended by a provider, according to the Susan G. Komen foundation.

The Myriad Financial Assistance Program and the Cancer Resource Foundation both offer financial assistance for certain cancer genetic testing.

Don’t panic about meaningless results

Chances are, your testing will come back with something not quite “right.”

“Everybody fails a genetic test,” Caplan says. “There’s always something wrong. You’re mortal. You won’t pass.”

But there’s a good chance that the “something wrong” will be inconsequential.

“I’ve seen people panic because the testing showed instead of having a one in five million chance of getting some disease, they have a one in a million chance. But really, does it matter?” he says.

Again, a genetic counselor can help you interpret your results. If you go to your family doctor, she might be unfamiliar with them and not know what to advice. If you do online testing, you may be on your own.

Think through your responses to testing very carefully

Remember that not all genetic abnormalities are created equal.

Jolie, for example, had a particularly bad mutation on her BRCA gene that gave her about an 87% chance of getting breast cancer in her lifetime. Other mutations might give a woman a 15% chance of getting breast cancer, which is not that much higher than the 12% chance a woman has without any mutations at all.

“To get surgery in their situation is really overkill,” Brawley says.

Even if you do have a serious genetic abnormality, it’s not written in stone what you should do.

CNN’s John Bonifield contributed to this report

Blood test predicts Alzheimer’s disease

— In a first-of-its-kind study, researchers have developed a blood test for Alzheimer’s disease that predicts with astonishing accuracy whether a healthy person will develop the disease.

Though much work still needs to be done, it is hoped the test will someday be available in doctors’ offices, since the only methods for predicting Alzheimer’s right now, such as PET scans and spinal taps, are expensive, impractical, often unreliable and sometimes risky.

“This is a potential game-changer,” said Dr. Howard Federoff, senior author of the report and a neurologist at Georgetown University Medical Center. “My level of enthusiasm is very high.”

The study was published in Nature Medicine.

‘We were surprised’

In the beginning, the researchers knew they wanted to find a blood test to detect Alzheimer’s but didn’t know what specifically to look for. Should they examine patients’ DNA? Their RNA? Or should they look for the byproducts of DNA and RNA, such as fats and proteins?

They decided to start with fats, since it was the easiest and least expensive. They drew blood from hundreds of healthy people over age 70 living near Rochester, New York, and Irvine, California. Five years later, 28 of the seniors had developed Alzheimer’s disease or the mild cognitive problems that usually precede it.

Scouring more than 100 fats, or lipids, for what might set this group apart, they found that these 28 seniors had low levels of 10 particular lipids, compared with healthy seniors.

To confirm their findings, the researchers then looked at the blood of 54 other patients who had Alzheimer’s or mild cognitive impairment. This group also had low levels of the lipids.

Overall, the blood test predicted who would get Alzheimer’s or mild cognitive impairment with over 90% accuracy.

“We were surprised,” said Mark Mapstone, a neuropsychologist at the University of Rochester Medical Center and lead author of the study. “But it turns out that it appears we were looking in the right place.”

The ‘holy grail’

The beauty of this test, Mapstone says, is that it caught Alzheimer’s before the patient even had symptoms, suggesting that the disease process begins long before people’s memories start failing. He says that perhaps the lipid levels started decreasing at the same time as brain cells started dying.

He and his team plan to try out this test in people in their 40s and 50s. If that works, he says, that would be the “holy grail,” because then researchers could try experimental drugs and treatments in a group that’s almost sure to get the disease. That would speed research along immensely.

Plus, people could get a heads up that they were probably destined to get Alzheimer’s. Although some people might not want to know that they’re destined for a horrible disease, others might be grateful for the warning.

Federoff said he would want to know whether he was on his way to getting the disease, even though there’s nothing he could do about it. He might want to take a family trip he’d been thinking about or might want to appoint a successor at work.

“I would make sure that things that are important to me get done,” he said.

But, Federoff added, others might not want to know they were about to get a devastating disease they were powerless to stop.

“I think it’s a very personal decision,” Federoff said. “It would have to be thought through on multiple dimensions. Patients and their families would have to be counseled.”

Next steps

Other research teams are looking at other possible tests for Alzheimer’s. The need for a screening test of some kind for Alzheimer’s has never been greater: A report released last week says the disease claims the lives of perhaps a half a million Americans, making it nearly as deadly as heart disease and cancer.

If any of these tests work out — and that’s still an if — it would take years to make it to doctors’ offices, since the test would need to be validated by other labs and with larger groups of people. Thee test developed by the Georgetown and Rochester researchers, for example, was used mainly in white people, and it might not work as well with other groups.

Heather Snyder, a spokeswoman for the Alzheimer’s Association, said the study was well done but much work is still needed.

“It’s an interesting paper. It’s an intriguing study. But it is very preliminary,” she said.


™ & © 2014 Cable News Network, Inc., a Time Warner Company. All rights reserved.

Answers to your breast cancer questions

(CNN) — When Angelina Jolie revealed she’d had a double mastectomy, she probably had a pretty good idea that her bravery would empower other women to tell their breast cancer stories.

What she didn’t know was that one of these women co-anchors a national morning news show.

On May 14, when Zoraida Sambolin walked into work and heard Jolie’s news, she realized this was the right time to tell viewers that five weeks before, she’d been diagnosed with breast cancer and had decided to have a double mastectomy.

“Angelina Jolie chose to bear her soul in writing and I chose to follow her lead in front of all our viewers Tuesday,” she later wrote in an article on “I am not yet on the other side, but judging by all the e-mails I’ve received from survivors, I am headed to a place that is stronger, wiser and definitely more empowered.”

Sambolin, co-host of CNN’s “Early Start,” is grateful for all the love and support she’s received from CNN’s viewers and readers. Many asked questions about their own health or the health of someone they love. Sambolin asked me to help answer these questions.

I’m worried I might have breast cancer. What are the signs?, the National Breast Cancer Foundation and the Mayo Clinic explain the signs and symptoms of breast cancer.

Angelina Jolie got a test to see if she carried a faulty breast cancer gene. Should I get that test?

Read this Empowered Patient column and this CNN article by Dr. Susan Domchek to help you decide. CNN’s iReporters have weighed in with their own decisions about breast cancer genetic testing, and this CNNMoney article discusses whether your insurance will cover genetic testing.

Like Angelina Jolie, I carry a faulty gene for breast cancer. Should I also get a double mastectomy?

Dr. Aaron Carroll writes on about the risks and benefits of Jolie’s choice. For another woman’s perspective, read Allison Gilbert’s moving article on

My doctor thinks I might have breast cancer. What tests will she use to find out?

Susan G. Komen for the Cure and the American Cancer Society explain the tests doctors use to diagnose breast cancer.

I’ve had a biopsy and read my pathology report, but I don’t understand it. Can you help? breaks down the information in a pathology report.

I was just diagnosed with breast cancer. What’s my next step?

My Breast Cancer Coach and Susan G. Komen can walk you through this new world you’ve entered.

I thought breast cancer was breast cancer. Now I’m learning I have a certain type of breast cancer. Help — I’m confused.

The Mayo Clinic explains the different types of breast cancer.

Sambolin has breast cancer and decided to get a double mastectomy. Actress Christina Applegate made that same choice. I have breast cancer — should I get a mastectomy?

There are a lot of treatment options for breast cancer, and it’s not always easy to decide which is best for you. Komen, the American Cancer Society, and the National Breast Cancer Foundation all have treatment guides.

If I get a mastectomy, how will surgeons give me new breasts?

This article explains breast cancer reconstruction options.

Should I get involved in a breast cancer study?

The American Cancer Society has some guidance.

My cancer isn’t going away. What should I do?

The American Cancer Society has this advice for what to do if breast cancer doesn’t go away or if it returns.

I’d like to connect with other women with breast cancer. Where can I find them?

There are many forums and online communities for women who have breast cancer, such as Previvors and Survivors, the Association of Cancer Online Resources, and


™ & © 2013 Cable News Network, Inc., a Time Warner Company. All rights reserved.