Healthcare Reform Passes

Where the bleeding disorders community’s priorities stand on Capitol Hill
Author: Melanie Padgett Powers

For the latest updates on the passage of healthcare reform, see the NHF Web site.

See also: Hemophilia and Healthcare Reform: What You Need to Know.

With the loss of the Democrats’ filibuster-proof majority in Congress and the public’s clamoring for Washington to make jobs priority No. 1, healthcare reform was waylaid the past few months. But on March 21, the House passed landmark healthcare reform legislation, setting up a vote in the Senate.

The National Hemophilia Foundation (NHF) remained committed to fighting for healthcare and insurance reform, including eliminating lifetime caps and annual limits, eliminating pre-existing condition exclusions, prohibiting insurance ratings based on health status and allowing dependents to stay on their parents’ health insurance plans longer.

“NHF has primarily focused on the private insurance reforms, because those are the key issues for our community,” says NHF Washington representative Johanna Gray. “We’ve taken the lead on lifetime insurance caps, which have been a huge issue.”

NHF advocated for healthcare reforms through:

  • Meetings with US representatives and senators and their staff
  • Letters to congressional leadership from NHF CEO Val Bias
  • Letters to Congress with coalition partners, such as the Raise the Cap Coalition, which includes more than 60 healthcare organizations
  • Blast emails to the bleeding disorders community encouraging consumers to contact their senators and representatives to ask them to support healthcare reform
  • Washington Days, NHF’s annual advocacy event on Capitol Hill

Differences Between the Senate and House Bills

NHF made it clear to Congress which provisions of the two healthcare reform bills it supports. Most of the provisions NHF supports are in the House bill. A major concern is that the Senate bill grandfathers existing private insurance plans, meaning existing plans would not have to follow any of the new insurance reforms, including elimination of lifetime and annual caps and pre-existing condition clauses. Here is a synopsis of some of the provisions included in the two versions:

Lifetime caps: The House bill would eliminate lifetime caps in new and existing plans in 2010, which NHF supports. The Senate bill would eliminate lifetime caps in new plans six months after the bill is enacted. Existing plans would be allowed to have lifetime caps indefinitely.

Annual limits: The House bill would eliminate annual limits in new plans in 2013 and existing plans in 2018. The Senate bill would eliminate annual limits in new plans in 2014. Until then, annual limits would be restricted by the US Department of Health and Human Services to a level that guarantees access to medical services with a minimal impact on premiums. Existing plans would be allowed to have annual limits indefinitely. NHF supports the House bill with one exception. NHF calls for the implementation of the Senate provision that would restrict annual limits, before the House bill would eliminate annual limits in 2013.

Pre-existing condition exclusions: The House bill would eliminate pre-existing condition exclusions in new plans in 2013 and existing plans by 2018. Beginning in 2010, it would limit the time that plans could look back for pre-existing conditions from six months to 30 days and would shorten the time plans could exclude coverage of benefits, from generally 12 months to three months. In the Senate bill, existing plans could continue to use pre-existing condition exclusions indefinitely. The Senate bill would eliminate pre-existing conditions in 2014 and exclusions for children immediately. NHF supports the House bill and the Senate clause eliminating exclusions for children immediately.

Guaranteed issue and renewal: The House bill would require “guaranteed issue,” meaning no one could be denied health insurance, and guaranteed renewal of insurance policies regardless of health status, use of health services or any other related factor in 2013. The Senate bill would require guaranteed issue and renewal as of 2014. NHF supports the House bill.

Extension of dependent coverage: The House bill would allow dependents to remain on their parents’ insurance until age 27, beginning in 2010. The Senate bill would allow coverage up to age 26. NHF supports the House bill.

Out-of-pocket caps: The House bill would set a maximum annual out-of-pocket cap at $5,000 for an individual and $10,000 for a family; the levels would be indexed to inflation. The Senate bill would set the maximums at $5,950 and $11,900. NHF supports the House bill.

Important to Remain Vigilant

No matter what path healthcare reform takes in the months and years ahead, it’s important for NHF consumers to continue to fight for reform. Even with the passage of healthcare reform, it remains important for NHF to monitor the implementation of the bill.

“The states will be required to implement a lot of the healthcare reform provisions, so it’s going to be very important for each state chapter to monitor that in their state,” says Michelle Rice, NHF regional director. “That’s where they need to get to know their insurance commissioner, their Medicaid officials, their state legislature. They need to be staying in close contact with those people and with other health groups in their state to make sure as things roll out that the people in that state are protected.”

Rice also reminds people that reform won’t happen overnight. “A lot of these provisions are on time delay. Once a bill passes, there’s still a lot of work to be done. The community must remain diligent in monitoring the implementation process in order to identify potential problems as they arise.”

It will continue to be important for members of the bleeding disorders community to stay involved. While NHF works diligently on Capitol Hill and at the state level, it’s the young man scared about becoming too old to stay on his parents’ health insurance and the dad explaining how his son capped out on his insurance plan when he was still in elementary school that make a difference to lawmakers. It’s critically important that those with bleeding disorders and their family members continue to share their stories with their representatives and senators.

“People in the hemophilia community make wonderful advocates, telling their story, telling their family members’ stories, relating them in ways that members of Congress can relate to and make them want to help,” Gray says. “Part of the reason that NHF has been successful historically is that our community members are engaged and are really effective in their advocacy.”

Man and woman in suits sitting at table talking
At NHF's 2010 Washington Days, Brenda Neubauer expresses her appreciation for Sen. Byron Dorgan’s (D-ND) efforts in helping draft legislation to eliminate annual and lifetime caps.

Brenda Neubauer is a good example of an effective advocate. Long active in advocacy efforts from her home in North Dakota, Neubauer became even more energized after one of her sons, who has severe hemophilia B, reached his $2 million insurance cap when he was 12 years old. Jacob, now 15, had been under his father’s self-insured plan. But because Neubauer’s law firm has a different type of insurance plan, she was able to secure new insurance with a $2 million cap.

“Basically, by a fluke, we were able to get him another $2 million [with the same company] because one was a self-insured plan and one was a small-group employer plan. Otherwise he would not have been eligible for any more coverage,” Neubauer said. “That really was a wake-up call that I needed to get more involved.”

Through participation in NHF’s Washington Days, Neubauer called on her senator for help. She began to call and meet regularly with Sen. Byron Dorgan (D-ND) and his staff to discuss how to help people who hit their insurance cap. In 2008 and 2009, Dorgan introduced bills that would increase lifetime caps, which helped raise the profile of a then-controversial issue.

Throughout the last few months, Neubauer said she felt unsettled but knew she couldn't give up. She encouraged others in the bleeding disorders community to continue to stress the need for healthcare reform with their state representatives and senators. “Our community needs to mobilize and advocate as a whole. Everyone has a stake in the final outcome of insurance reform and needs to get involved.”  

Neubauer says her son’s strength keeps her fighting for reform. “He doesn’t let hemophilia slow him down or get him down. If I don’t do this, the rest of his life he’s going to be struggling to try to provide for his healthcare. It’s my obligation as his mother to keep fighting for him.”