Summer 2008 • 13th EditionA publication of Coram, Inc.

NewsandInformationfortheAlpha-1Community

Co-Payments Soar for Drugs with High Prices

Living with Alpha-1

Enjoy the Benefits of Apria Programs

Editor’s Note

Dear Friends,

The passing and signing of GINA finally happened! It took 12 long years, but President Bush signed the Genetic Information Nondiscrimination Act (GINA) into law on May 21, 2008. GINA is the first and only federal legislation that provides protections against discrimination based on an individual’s genetic information in health insurance coverage and employment settings.

This is the first “civil rights” law of the new genetics age and you should all be proud of your participation in the law passing the House of Representatives and the Senate. The alpha-1 community, along with many other genetic condition groups, helped to pass a law that will finally give everyone access to genetic tests and disease management without fear of discrimination by insurance companies and employers.

We all have several genetic markers that could predispose us for a condition or illness that could create a fear of genetic discrimination. With GINA, a law with true penalties, Americans no longer have to fear being tested for a condition that could help make early lifesaving decisions. People will no longer have to be afraid of testing children or non-symptomatic family members for any genetic condition.

The Coalition for Genetic Fairness has developed these talking points about the new protections in place. They state that GINA protects against genetic discrimination by:

Prohibiting group health insurance plans and issuers from offering coverage, on the group or individual market, eligibility •based on determinations or adjusting premiums or contributions on the basis of an individual’s genetic information. Insurance companies cannot request, require or purchase the results of genetic tests, and they are prohibited from disclosing personal genetic information.

Prohibiting issuers of Medigap policies from adjusting pricing or conditioning eligibility on the basis of genetic information. •They cannot request, require or purchase the results of genetic tests, or disclose genetic information.

Prohibiting employers from firing, refusing to hire, or otherwise discriminating with respect to compensation, terms, conditions •or privileges of employment. Employers may not request, require or purchase genetic information, and they are also prohibited from disclosing personal genetic information. Similar provisions apply to employment agencies and labor organizations.

While it will take 12 months for the health insurance protections to go into effect, and 18 months for the workplace protections to formally become law, GINA has finally passed and it was by the hard work of many of you my friends. We have all helped to give this gift of protection to our children and grandchildren. We, members of the alpha-1 community, helped to pass the first civil rights law of the new millennium!

Sincerely,Nancye BuelowEditor-in-Chief,National Director of Consumer Advocacy and Program Development, Coram Alpha-1 Services

Toll-Free 800.247.0617 x00 Tel 828.627.1205 Cell 828.246.4541 Email buelown@coramhc.com

Features

Co-Payments Soar for Drugs with High Prices Health insurance companies are rapidly adopting a new pricing system for very expensive drugs, asking patients to pay hundreds and even thousands of dollars for prescription medications that may save their lives or slow the progress of serious diseases.

Page 4

Living with alpha-1 Being diagnosed with alpha-1 four years ago hasn’t changed life that much for busy dad Garry Neal. He’s even done something most of us haven’t – participated in an episode of Extreme Makeover: Home Edition!

Page 7

alpha-1 ResourcesFrom vacations to therapies – learn what Apria Healthcare programs and services are available to you as a Coram consumer.

Page 8

Coram’s alpha-1 advocacy ProgramsProviding educational materials, resources and support to those affected by alpha-1.

Page 10

Who to Contact for Help

Page 11

Summer 2008

COR01011-0708

The Alpha-1 Advocate, brought to you by Coram, Inc., is a quarterly publication that is provided free of charge to the alpha-1 community. Opinions expressed by contributing authors and sources are not necessarily those of the publisher. Information contained in this newsletter is for educational purposes only and is not intended as a substitute for medical or billing advice. Do not use this information to diagnose or treat a health problem or disease without consulting a qualified physician. Please consult your physician before starting any course of supplementation or treatment, particularly if you are currently under medical care. Never disregard medical advice or delay in seeking it because of something you have read in this newsletter.

© 2008 Coram, Inc. All rights reserved. No part of this publication may be distributed, reprinted or photocopied without prior written permission of copyright owner. All service marks, trademarks and trade names presented or referred to in this newsletter are the property of their respective owners.

We welcome your comments, stories and suggestions. All correspondence, reprint requests, change of address and subscription inquiries should be sent to: alpha-1 advocate c/o Coram, Inc. 30 Garfield, Suite B Asheville, NC 28803-2678

Toll-Free 800.247.0617 x00 Tel 828.627.1205 email buelown@coramhc.com

editor-in-ChiefNancye Buelow

Managing editorCarlota Bentley

Senior editorPiper Peteet-Kilgore

Clinical editorLou Anne Epperson

graphic DesignNancy Geiger Wooten

News and Information for the Alpha-1 Community

2 Summer 2008

From The New York Times, April 14 © 2008 The New York Times All rights reserved. Used by permission and protected by the Copyright Laws of the United States. The printing, copying, redistribution, or retransmission of the Material without express written permission is prohibited.

Health insurance companies are rapidly adopting a new pricing system for very expensive drugs, asking patients to pay hundreds and even thousands of dollars for prescriptions for medications that may save their lives or slow the progress of serious diseases.

With the new pricing system, insurers abandoned the traditional arrangement that has patients pay a fixed amount, like $10, $20 or $30 for a prescription, no matter what the drug’s actual cost. Instead, they are charging patients a percentage of the cost of certain high-priced drugs, usually 20 to 33 percent, which can amount to thousands of dollars a month.

The system means that the burden of expensive health care can now affect insured people, too.

No one knows how many patients are affected, but hundreds of drugs are priced this new way. They are used to treat diseases that may be fairly common, including multiple sclerosis, rheumatoid arthritis, hemophilia, hepatitis C and some cancers. There are no cheaper equivalents for these drugs, so patients are forced to pay the price or do without.

Insurers say the new system keeps everyone’s premiums down at a time when some of the most innovative and promising new treatments for conditions like cancer and rheumatoid arthritis and multiple sclerosis can cost $100,000 and more a year.

But the result is that patients may have to spend more for a drug than they pay for their mortgages, more, in some cases, than their monthly incomes.

The system, often called Tier 4, began in earnest with Medicare drug plans and spread rapidly. It is now incorporated into 86 percent of those plans. Some have even higher co-payments for certain drugs, a Tier 5.

Now Tier 4 is also showing up in insurance that people buy on their own or acquire through employers, said Dan Mendelson of Avalere Health, a research organization in Washington. It is the fastest-growing segment in private insurance, Mr. Mendelson said. Five years ago it was virtually nonexistent in private plans, he said. Now 10 percent of them have Tier 4 drug categories.

Private insurers began offering Tier 4 plans in response to employers who were

Co-Payments Soar for Drugs with High PricesBy gina Kolata

“This is an erosion of the traditional concept of insurance. Those beneficiaries who bear the burden of illness are also bearing the burden of cost.”

Alpha-1 Advocate 3

looking for ways to keep costs down, said Karen Ignagni, president of America’s Health Insurance Plans, which represents most of the nation’s health insurers. When people who need Tier 4 drugs pay more for them, other subscribers in the plan pay less for their coverage.

But the new system sticks seriously ill people with huge bills, said James Robinson, a health economist at the University of California, Berkeley. “It is very unfortunate social policy,” Dr. Robinson said. “The more the sick person pays, the less the healthy person pays.”

Traditionally, the idea of insurance was to spread the costs of paying for the sick.

“This is an erosion of the traditional concept of insurance,” Mr. Mendelson said. “Those beneficiaries who bear the burden of illness are also bearing the burden of cost.”

And often, patients say, they had no idea that they would be faced with such a situation.

It happened to Robin Steinwand, 53, who has multiple sclerosis.

In January, shortly after Ms. Steinwand renewed her insurance policy with Kaiser Permanente, she went to refill her prescription for Copaxone. She had been insured with Kaiser for 17 years through her husband, a federal employee, and had had no complaints about the coverage.

She had been taking Copaxone since multiple sclerosis was diagnosed in 2000, buying a 30 days’ supply at a time. And even though the drug costs $1,900 a month, Kaiser required only a $20 co-payment.

Not this time. When Ms. Steinwand went to pick up her prescription at a pharmacy near her home in Silver Spring, Md., the pharmacist handed her a bill for $325.

There must be a mistake, Ms. Steinwand said. So the pharmacist checked with her supervisor. The new price was correct. Kaiser’s policy had changed. Now Kaiser was charging 25 percent of the cost of the drug up to a maximum of $325 per prescription. Her annual cost would be $3,900 and unless her insurance changed or the drug dropped in price, it would go on for the rest of her life.

“I charged it, then got into my car and burst into tears,” Ms. Steinwand said. 8

With the new system, patients may

have to spend more for a drug than they

pay for their mortgages, more, in some

cases, than their monthly incomes.

4 Summer 2008

She needed the drug, she said, because it can slow the course of her disease. And she knew she would just have to pay for it, but it would not be easy.

“It’s a tough economic time for everyone,” she said. “My son will start college in a year and a half. We are asking ourselves, can we afford a vacation? Can we continue to save for retirement and college?”

Although Kaiser advised patients of the new plan in its brochure that it sent out in the open enrollment period late last year, Ms. Steinwand did not notice it. And private insurers, Mr. Mendelson said, can legally change their coverage to one in which some drugs are Tier 4 with no advance notice.

Medicare drug plans have to notify patients but, Mr. Mendelson said, “that doesn’t mean the person will hear about it.” He added, “You don’t read all your mail.”

Some patients said they had no idea whether their plan changed or whether it always had a Tier 4. The new system came as a surprise when they found out that they needed an expensive drug.

That’s what happened to Robert W. Banning of Arlington, Va., when his doctor prescribed Sprycel for his chronic myelogenous leukemia. The drug can block the growth of cancer cells, extending lives. It is a tablet to be taken twice a day — no need for chemotherapy infusions.

Mr. Banning, 81, a retired owner of car dealerships, thought he had good insurance through AARP. But Sprycel, which he will have to take for the rest of his life, costs more than $13,500 for a 90-day supply, and Mr. Banning soon discovered that the AARP plan required him to pay more than $4,000.

Mr. Banning and his son, Robert Banning Jr., have accepted the situation. “We’re not trying to make anybody the heavy,” the father said.

So far, they have not purchased the drug. But if they do, they know that the expense would go on and on, his son said. “Somehow or other, myself and my family will do whatever it takes. You don’t put your parent on a scale.”

But Ms. Steinwand was not so sanguine. She immediately asked Kaiser why it had changed its plan.

The answer came in a letter from the federal Office of Personnel Management, which negotiates with health insurers in the plan her husband has as a federal employee. Kaiser classifies drugs like Copaxone as specialty drugs. They, the letter said, “are high-cost drugs used to treat relatively few people suffering from complex conditions like anemia, cancer, hemophilia, multiple sclerosis, rheumatoid arthritis and human growth hormone deficiency.”

And Kaiser, the agency added, had made a convincing argument that charging a percentage of the cost of these drugs “helped lower the rates for federal employees.”

When people who need Tier 4 drugs pay more for them, other subscribers in the plan pay less for their coverage.

continued on page 9

Alpha-1 Advocate 5

Garry Neal stays pretty busy and takes it all in stride. Being a father of three — a son who’s a freshman in college and twin daughters who are juniors in high school — definitely keeps him on his toes! But Garry says having alpha-1 hasn’t changed his life that much at all.

Garry was diagnosed with alpha-1 about four years ago after experiencing unexplained shortness of breath. Unlike many individuals who often receive misdiagnoses, this wasn’t the case with Garry. After explaining his onset of symptoms to his family doctor, he was referred to a pulmonologist who immediately tested him for alpha-1 antitrypsin. When the test came back positive, he began receiving treatment.

Garry receives weekly infusions at home with the assistance of his nurse. Other than that, life hasn’t changed too much. “You learn to adapt to your breathing function,” says Garry. “I just try to stay on top of my health and avoid getting sick since the onset of pneumonia can be harder on your body if you have alpha-1.”

So how did Garry become a participant with the Extreme Makeover: Home Edition television show? Garry runs the service and warranty department for Anderson Homes in Delaware where he lives. He’s responsible for meeting with new homeowners and listening to their concerns on their warranties. When Anderson Homes decided to participate in an Extreme Makeover: Home Edition episode in February of this year, Garry was one of six people who helped to supervise the demolition and building of the homes.

Garry was part of the COBRA team, and they basically did whatever needed to be done to keep the project going. “We started on February 5, and built two homes by February 10,” said Garry. “We worked 12-hour shifts for those five days and it was a lot to do in a short amount of time.”

Since the project began in February, they worked in a variety of weather conditions as well. “We basically experienced everything: cold, warm, rain, etc. We worked through it all.”

Garry’s nurse even volunteered for a few days. “He’s been with me almost from the beginning and we have a really good relationship. We have a lot of things in common so it was fun having him there.”

Even though it was a lot of work, Garry thoroughly enjoyed the Extreme Makeover: Home Edition experience. “It was both emotionally and physically draining, but I wouldn’t have missed it for the world.” t

Living with Alpha-1Meet garry Neal – Father of Three and… Extreme Makeover: Home Edition Participant?

Life hasn’t changed too much

for Garry since being diagnosed

with alpha-1. “I just try to stay

on top of my health and avoid

getting sick ...,” he says.

Above: Garry on location with Extreme Makeover: Home Edition.

6 Summer 2008

Alpha-1 Resources

apria Programs and ServicesCoram’s recent merger with Apria has greatly enhanced our level of home care services. In addition to the services you’re familiar with, Coram is now able to offer additional therapies and options. Aralast™ and Zemaira® for example, are two alpha-1 augmentation therapies that we now offer through our relationship with Apria. Other services include:

Enteral and parenteral nutrition•Respiratory medication•Nebulizer medication•Diabetes medication•Apria Great Escapes™ travel program•

You can learn more about the Great Escapes program in the next column.

For additional information on these or other Apria services, please contact an Alpha-1 Advocate or Apria directly at 800.277.4288. t

Have Bags, Will Travel?Interested in taking a summer trip, but unsure how to continue your infusions? Apria Healthcare takes the guesswork out of traveling by offering Apria Great Escapes™. A national program, Great Escapes allows you to travel comfortably with supplemental oxygen, respiratory medications, infusion services and home medical equipment. Apria serves all 50 states, including Alaska and Hawaii.* As the nation’s largest integrated respiratory medications homecare provider, Apria can provide you with personalized, quality care and 24-hour, on-call availability. They provide respiratory services, oxygen, home-delivered respiratory medications and home medical equipment to more people with Medicare and other payors than any other home care company in the United States.

For more information on the Apria Great Escapes program, please call 800.277.4288 or visit Apria online at www.apria.com. t

*Check with your home and destination Apria branch(es) to confirm compatibility of equipment and service.

In winter I get up at night,And dress by yellow candle light.In summer quite the other way,I have to go to bed by day,

Bed In Summerby Robert Louis Stevenson

I have to go to bed and seeThe birds still hopping on the tree,Or hear the grown up people’s feetStill going past me in the street,

And does it not seem hard to you,When all the sky is clear and blue,And I should like so much to play,To have to go to bed by day?

Alpha-1 Advocate 7

continued from page 6Co-Payments Soar for Drugs with High Prices

Ms. Steinwand can change plans at the end of the year, choosing one that allows her to pay $20 for the Copaxone, but she worries about whether that will help. “I am a little nervous,” she said. “Will the next company follow suit next year?”

But it turns out that she won’t have to worry, at least for the rest of this year.

A Kaiser spokeswoman, Sandra R. Gregg, said on Friday that Kaiser had decided to suspend the change for the program involving federal employees in the mid-Atlantic region while it reviewed the new policy. The suspension will last for the rest of the year, she said. Ms. Steinwand and others who paid the new price for their drugs will be repaid the difference between the new price and the old co-payment.

Ms. Gregg explained that Kaiser had been discussing the new pricing plan with the Office of Personnel Management over the previous few days because patients had been raising questions about it. That led to the decision to suspend the changed pricing system.

“Letters will go out next week,” Ms. Gregg said.

But some with the new plans say they have no way out.

Julie Bass, who lives near Orlando, Fla., has metastatic breast cancer, lives on Social Security disability payments, and because she is disabled, is covered by insurance through a Medicare H.M.O. Ms. Bass, 52, said she had no alternatives to her H.M.O. She said she could not afford a regular Medicare plan, which has co-payments of 20 percent for such things as emergency care, outpatient surgery and scans. That left her with a choice of two Medicare H.M.O’s that operate in her region. But of the two H.M.O’s, her doctors accept only Wellcare.

Now, she said, one drug her doctor may prescribe to control her cancer is Tykerb. But her insurer, Wellcare, classifies it as Tier 4, and she knows she cannot afford it.

Wellcare declined to say what Tykerb might cost, but its list price according to a standard source, Red Book, is $3,480 for 150 tablets, which may last a patient 21 days. Wellcare requires patients to pay a third of the cost of its Tier 4 drugs.

“For everybody in my position with metastatic breast cancer, there are times when you are stable and can go off treatment,” Ms. Bass said. “But if we are progressing, we have to be on treatment, or we will die.”

“People’s eyes need to be opened,” she said. “They need to understand that these drugs are very costly, and there are a lot of people out there who are struggling with these costs.” t

8 Summer 2008

The goal of Coram’s Alpha-1 Advocacy program is to provide better educational materials for alpha-1 patients and their families, and to provide resources and support to all those affected by the condition. These goals are met by highly trained Alpha-1 Advocates who are hired from within the alpha-1 community.

tHealth Insurance IssuesReferrals to nonprofits for premium assistance•Referrals to nonprofits for state high-risk pool insurance•COBRA counseling and assistance•

tPeer Mentoring Program

One-to-one support for alpha-1 consumers and family members by specially trained Alpha-1 Advocates.

tThe Alpha-1 Advocate Quarterly Newsletter The Advocate is provided free of charge to the alpha-1 community.

tAralast™ Users’ Resource Network

Monthly teleconference support meetings for Aralast users•Educational professionals for physicians and nurses•

tConference Call Series

Monthly, toll-free educational conference call series for consumers and their families.

tQuality of Life Patient Outcomes Study

In an effort to learn more about the quality of life (QOL) and outcomes of Aralast users, Coram is conducting a QOL patient outcomes study. We are currently enrolling Coram Aralast patients to participate in the study. If you are interested in participating, please call 866.367.2174.

tIncreasing Awareness

Coram’s 130-plus field representatives are aggressively educating physicians and nurses about the need to test for alpha-1 and early detection of alpha-1 antitrypsin deficiency.

Coram’s Alpha-1 Advocacy Program

In addition to being a leader in

providing for alpha-1 patients,

Coram offers expertise and

programs for in-home IV

anti-infective care, immune

therapies, nutrition and pre-

and post-transplant treatments.

To learn more about Coram’s

Alpha-1 Advocacy program or

any of Coram’s other services,

call 866.for.A1Pi (866.367.2174).

Melodie Beck

Southern States Alpha-1 Consumer Advocate

Toll-Free 877.288.2003Tel 336.294.3992Emailbeckm@coramhc.com

BarbeeBennington

Midwestern and Western States Alpha-1 Consumer Advocate

Toll-Free 800.355.5180 x50 Tel 480.429.1715 Email benningtonb@coramhc.com

Aaron Holderby

Mid-Atlantic States Alpha-1 Consumer Advocate

Toll-Free 866.760.5670 Tel 304.768.1241 Email holderbya@coramhc.com

Kathy Johnson, RN

Supervisor, Northeastern States Alpha-1 Consumer Advocate

Toll-Free 866.201.4602 x7071Tel 716.773.1529 Email johnsonkat@coramhc.com

Loretta Kristofek, RN

Investigator for Coram Alpha-1 Quality of Life Study

Tel 321.206.3969Email kristofekl@coramhc.com

NancyeBuelow

National Director of Consumer Advocacy and Program Development, Coram Alpha-1 Services

Toll-Free 800.247.0617 x00 Tel 828.627.1205 Cell828.246.4541Email buelown@coramhc.com

ApublicationofCoram,Inc.

866.for.A1Pi(866.367.2174)•coramhc.com

If you have any questions or need assistance, please feel free to contact an alpha-1 advocate.

WhotoContactforHelp

NewsandInformationfortheAlpha-1Community

Who Should be Tested forAlpha-1 Antitrypsin Deficiency?

People who are at risk for alpha-1 antitrypsin deficiency include:

• AnyonewithCOPD

• Anyonewithasthmaorwhoexperiencesshortnessofbreath

• Anyoneundertheageof50withsymptomsofemphysema

• Anyoneintheir30sor40swithdecreasedexercisetolerance

• Anyonewithrecurringinfectionsthatdon’trespondtoantibiotics

For more information about testing and alpha-1 treatment options, call

866.for.A1Pi (866.367.2174).

According to the World Health Organization, “all patients with COPD, and adults and adolescents with asthma should be screened once for [alpha-1 antitrypsin deficiency] using a quantitative test.”

NewsandInformationfortheAlpha-1Community

A publication of Coram, Inc. • coramhc.com • 866.for.A1Pi