Editorial: When Drug Costs Soar Beyond Reach

New York Times
April 15, 2008

It doesn’t take a health policy expert to recognize that something has gone terribly wrong when patients have to pay thousands of dollars a month for drugs that they need to maintain their health — and possibly save their lives. Congress needs to determine why this is happening and what can be done about it.

The plight of patients who have recently been hit with a huge increase in their insurance co-payments for high-priced prescription drugs was laid out in The Times on Monday by Gina Kolata. Instead of paying a modest $10 to $30 co-payment, as is usually the case for cheaper drugs, patients who need especially costly medicines are being forced to pay 20 percent to 33 percent of the bill (up to an annual maximum) for drugs that can cost tens of thousands of dollars, or even hundreds of thousands of dollars, a year.

These drugs — what insurers call Tier 4 medicines — are used to treat such serious illnesses as multiple sclerosis, hemophilia, certain cancers and rheumatoid arthritis. And since there are usually no cheaper alternatives, patients must either pay or do without, unless they can get their medicines through some charitable plan.

There is little doubt that the so-called tiered formularies, in which co-payments rise along with the cost of the drugs, are a sensible approach for encouraging consumers to use the cheapest drug suitable for their condition. But the system seems to break down when it moves to Tier 4 drugs where co-payments can be huge and suitable alternatives don’t exist.

The insurers say that forcing patients to pay more for unusually high-priced drugs allows them to keep down the premiums charged to everyone else. That turns the ordinary notion of insurance on its head. Instead of spreading the risks and costs across a wide pool of people to protect a smaller number of very sick patients from financial ruin, insurers are gouging the sickest patients to keep premiums down for healthier people.

The health insurance system is so complex that it is hard to parse the blame for this injustice. The drug companies, especially the biotechnology companies, are at the root of the problem; they often charge exorbitant prices for monopoly drugs that were developed with heavy government assistance. Washington needs to rein them in by encouraging generic competition for biological drugs and allowing government programs to negotiate lower prices.

Employers, including the federal government, also bear responsibility. They have been pressing to reduce their prescription drug expenditures, and all health care expenditures, by shifting more of the burden to patients. One patient who had been paying only $20 for a month’s supply of a multiple sclerosis drug was shocked when the charge rose to $325 per month. (It has since been suspended.) Another patient found that his co-payment for a newly prescribed leukemia drug would exceed $4,000 for a 90-day supply, so he has deferred buying it.

If patients do without medicines or put off taking them, the likely result will be sicker patients, and higher costs, down the road. What is not clear is whether insurers are primarily reacting to pressure from employers or are exploiting the situation to increase their profits. Congress needs to probe hard to find out how many patients are facing enormous drug bills and how best to protect them from medical and financial disaster.

MS Activist Responds to High Drug Costs

It's not news that drug companies fleece us. I live it. It was 10 years ago this summer that I fell down some stairs one morning and, by the end of the day, learned that I was living with multiple sclerosis, a disease shared with more than 10,000 fellow Wisconsinites.

When I was diagnosed, the neurologist told me that this probably wasn't a death sentence, that these were exciting times for people living with MS. He told me that recent technologies, new drugs, were showing promise. Also during the visit, I learned that these new drugs couldn't be guaranteed to help, that the long-term effects of injecting the drugs for a lifetime were uncertain and that these drugs were "very expensive" - $800 per month. Hearing uncertain benefit, uncertain safety and unbelievably expensive, I said no, thanks.

A few years later, after awaking to realize my legs wouldn't work, I decided to begin using the expensive Interferon-B biological drug that I've since injected every other day. When I started, the drug cost was $980 per month. Six and a half years later, the drug costs almost $2,250 per month. It is no more effective now than when it cost more than $1,000 less per month. Coincidentally, I bought a different technology, a computer, the same year I started buying biological drug injections monthly. The computer cost about $2,000. Last year, I bought a new computer - this one was half the price and twice as fast, with five times the memory.

Why does one technology - a computer - get significantly better at a lower cost over time while another gets twice as expensive with no additional effectiveness - the drug?


This is an exceprt from a letter to the editor from Scott Hanson of Middleton, Wisc. The Milwaukee Journal Sentinel ran it on April 19. Scott serves on the Federal Activism Council of the National Multiple Sclerosis Society. Read the complete letter here.

In the News: Higher Co-Payments for Expensive Drugs

In January, shortly after Robin Steinwand, 53, who has multiple sclerosis 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. 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.

This is an excerpt from a New York Times article from April 14, 2008, on the increasing costs of co-payments for certain high-priced drugs. Read the complete article here.

27 Senators have Signed on to Support Multiple Sclerosis Research Funding

Thanks to the hard work of MS Activists 27 Senators signed on to a letter requesting that $15 million be provided for multiple sclerosis research through the Congressionally Directed Medical Research Programs (CDMRP). This Dear Colleague letter was circulated in the Senate by Senators Sherrod Brown (OH) and Jim Bunning (KY).

The letter will now be sent to the Senate Appropriations Committee for consideration.

Please call and say THANK YOU if your Senator signed. You can call the Capitol switchboard at 1-800-828-0498 and ask to be connected to your Senator's office.

Dear Colleague Signers as of April 14, 2008
Daniel Akaka (HI)
Joe Biden (DE)
Jeff Bingaman (NM)
Barbara Boxer (CA)
Sherrod Brown (OH)
Jim Bunning (KY)
Maria Cantwell (WA)
Robert Casey (PA)
Norm Coleman (MN)
Susan Collins (ME)
Chris Dodd (CT)
Richard Durbin (IL)
Edward Kennedy (MA)
John Kerry (MA)
Amy Klobuchar (MN)
Frank Lautenberg (NJ)
Joe Lieberman (CT)
Robert Menendez (NJ)
Jack Reed (RI)
Bernard Sanders (VT)
Chuck Schumer (NY)
Olympia Snowe (ME)
Arlen Specter (PA)
Debbie Stabenow (MI)
John Warner (VA)
Sheldon Whitehouse (RI)
Ron Wyden (OR)

Last Chance to Urge your Senators to Sign on to Support MS Research

More than 25,000 veterans who receive care at the Veterans Administration have been diagnosed with multiple sclerosis. A new avenue of MS research funding through the Department of Defense would benefit our veterans and people nationwide who live with MS. This is the last opportunity to ask your Senators to sign on in support.

Call the Capitol switchboard today at 1-800-828-0498 and ask to be connected to your Senator's office. Urge your Senators to support MS and sign on to the Senate Dear Colleague letter being circulated by Senators Sherrod Brown (OH) and Jim Bunning (KY). The deadline is April 9.

Click here for more information and talking points.

The Senate Dear Colleague letter, sponsored by Senators Brown and Bunning, requests a $15 million appropriation under the FY 2009 defense appropriations bill for MS research funding in the Congressionally Directed Medical Research Programs (CDMRP) at DoD. Twenty Senators already have signed on. Has your Senator? Call 1-800-828-0498 today and ask to be connected to your Senator's office.

Remember to File for Tax Rebate

Beneficiaries of Social Security disability benefits can qualify for a rebate under the new economic stimulus package, even though they are not subject to income tax. This applies to SSDI beneficiaries but not SSI beneficiaries.

To receive the rebate, you must file your 2007 tax return. The package signed by President Bush contains a special provision allowing Social Security beneficiaries to count those benefits toward the qualifying income requirement of $3,000. Find out more.

Press Release: Congressman Carnahan Recognizes Efforts of Local MS Researchers

In conjunction with MS Awareness Week (March 10-16), the National Multiple Sclerosis Society Gateway Area Chapter and Congressman Russ Carnahan, invited local researchers in the field of MS to receive a Congressional Proclamation in appreciation for their dedication and accomplishments ...

Those researchers recognized included:

• Dr. Barry Singer – neurologist and MS specialist with BJC Medical Group, who treats more than 500 patients with MS and runs clinical trials to test new therapies.
• Dr. Amy Rauchway – neurologist at St. Louis University actively involved in clinical research and trials.
• Dr. Barbara Green – Director of the West County MS Center at St. John’s Mercy Medical Center .
• Dr. Anne Cross – Director of the John L. Trotter MS Center at Washington University .
• Dr. Florian Thomas – Director of the MS Center at St. Louis University and the MS Center at the St. Louis Veterans Affairs Medical Center, and fellow board member of the Chapter.
• Dr. Rob Naismith – neurologist with Washington University who does extensive MS research.
• Dr. Becky Parks – head of the MS Clinic at Washington University.
• Dr. Eric Klawiter – conduct research and clinical trials at the John L. Trotter MS Center.

This is an excerpt from a press release issued by the Office of Congressman Russ Carnahan. See photos of the event from the March 24 post below. Read more here.

Announcing the New Congressional Multiple Sclerosis Caucus in the Senate

Senator Byron Dorgan (ND) and Senator Orrin Hatch (UT) have agreed to serve as the co-chairs of the new Congressional Multiple Sclerosis Caucus in the U.S. Senate. We are confident that the leadership of these two prominent Senators will help raise awareness and provide education about MS on Capitol Hill.

Like the House MS Caucus, the Congressional MS Caucus in the Senate provides MS activists with champions in Congress. When we have an MS issue that needs attention (such as funding for MS research), we will look to the MS Caucus for their support. This bi-partisan body will serve as a forum for members of Congress, their staff, related organizations, and individuals to discuss critical healthcare, disability, research, and other issues affecting people living with MS and other conditions.

Once the Caucus is formerly announced in the Senate, you will be able to help recruit your Senators to join.