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Neurologists and Patient Groups Seek More Funds for Headache Research

WASHINGTON, DC—The Alliance for Headache Disorders Advocacy (AHDA) is talking to legislators to stress the need for more research that ultimately could benefit patients. Members of the organization are following up with 132 lawmakers whom they visited on Capitol Hill on February 11, 2014. Approximately 85 people, including neurologists and advocates for patients with cluster headache and migraine, took part in this annual event known as Headache on the Hill.

The AHDA went to Washington this year with three goals. The first was to ensure that the NIH includes at least three members with expertise in headache on a permanent peer review study section panel that reviews grant proposals for headache research. The second goal was to persuade the Centers for Medicare and Medicaid Services to reimburse patients who receive oxygen as a treatment for cluster headache. The AHDA’s final goal was for the Senate to make research on chronic migraine and postconcussive headache eligible for federal funding from the Congressionally Directed Medical Research Program.

Previous visits to Capitol Hill have resulted in several accomplishments, said William Young, MD, Professor of Neurology at Thomas Jefferson University in Philadelphia and a member of the AHDA’s executive committee. At the group’s urging, NIH began tracking its funding of migraine and headache research, Dr. Young told Neurology Reviews. On five occasions, the AHDA persuaded Congress to include report language in the congressional record that supported increasing NIH funding for research on headache disorders.

Members of the AHDA include professional organizations such as the American Academy of Neurology, the American Headache Society, the Headache Cooperative of New England, and the Headache Cooperative of the Pacific. The AHDA’s membership also includes patient advocacy groups such as Clusterbusters and the National Headache Foundation.

William Young, MDAlan Rapoport, MDStory Landis, PhDLinda Porter, PhD

Increased NIH Funding for Headache Research May Be Inadequate
One of the AHDA’s principal contentions is that the amount of NIH funding spent on headache research is disproportionally small in light of headache disorders’ burden on patients. Members cite the Global Burden of Disease Study 2010, which found that migraine causes 30% of the total disease burden and more than half of the disability burden attributed to neurologic diseases. “While the mission of the NINDS is to seek knowledge ‘to reduce the burden of neurological disease,’ NINDS spent less than 1% of its budget (ie, $15.4 million) on research related to headache disorders in 2013,” Robert Shapiro, MD, PhD, Professor of Neurological Sciences at the University of Vermont in Burlington, and past president of the AHDA, told Neurology Reviews. The total NIH funding for research on headache disorders was $25 million in 2013, which amounted to less than 0.09% of the NIH budget.

Nevertheless, “at a time when the NIH budget has been dropping in real dollars, … there’s been a substantial increase in migraine funding and headache funding,” Story Landis, PhD, Director of NINDS in Bethesda, Maryland, told Neurology Reviews. In 2010, NIH spent $18 million on headache research, compared with $25 million in 2013. “It’s still a very small amount of money,” added Dr. Landis, “but I think there has been a significant increase.”

The 2013 figure “represents a 31.6% rise in funding since 2010, while the total NIH budget was actually cut 6.7% during the same interval,” said Dr. Shapiro. “The increase in headache research funding is encouraging, welcome, and may partly reflect AHDA advocacy efforts, but realistically, NIH funding for migraine research alone would be expected to exceed $250 million annually when compared to the median funding of diseases with similar measured burden,” he added.

NINDS does not allocate specific funds for particular diseases. Instead, the institute invites investigators to submit grant applications, which undergo peer review. NINDS funds grant requests according to the review panels’ determinations about the submissions’ scientific excellence.

“One of the things that we’re finding difficult about increasing our spending for headache research is that the community of researchers in headache is relatively small, [compared with] a lot of the other neurologic disorders that we fund,” Linda Porter, PhD, Program Director of the Extramural Research Program at NINDS, told Neurology Reviews. “With a small community, we get a small number of grant applications.”

To increase the number of grant applications it receives, NIH supports career development programs for junior physician scientists, who are guided by mentors. At scientific meetings about headache and pain, NIH staff host workshops that teach investigators about the institute’s funding mechanisms and how to write and submit a successful grant application. The workshops are intended to explain the NIH process and to encourage investigators to request grants.

 

 

Grant Requests May Not Be Reviewed by Headache Experts
NIH’s Center for Scientific Review examines most grant requests for headache research, but only one of the Center’s study section panels includes a permanent member who is a headache research scientist. The other study section panels maintain open slots for ad hoc members whose expertise is not consistently needed. When a grant application for headache research needs review, the study section panels try to find headache experts to fill these ad hoc slots but do not always succeed. The AHDA is urging NIH to install at least three headache specialists as permanent members of the study section panels so that these grant requests receive “fair peer review,” said Dr. Young.

It has been difficult to find reviewers with headache expertise to join the study section panels, partly because of the size of the community of headache experts, said Dr. Porter. And adding these experts to the panels may be problematic, she continued. Depending on the type of research described in an application, a grant request might be reviewed by a study section that focuses on epidemiology or basic molecular science, for example. “Trying to keep an expert on each one of those panels when those panels don’t get a steady flow of headache research grant [requests] is a difficult thing for the Center for Scientific Review to maintain,” said Dr. Porter.

The NIH is willing to give headache organizations the criteria for serving as a reviewer for the Center for Scientific Review. In turn, the organizations could post the information on their websites, prescreen their members who would like to serve, and forward names to the NIH for consideration. This tactic would “open the communication up a little bit more,” said Dr. Porter.

Neurologists Seek Reimbursement for Oxygen Treatment
Some of the AHDA’s lobbying efforts this year related not to research, but to an effective and safe treatment already available for patients with cluster headache. The only FDA-approved drug for this disease is an injection of sumatriptan. Neurologists may hesitate to prescribe sumatriptan to patients who are 50 or older, have blood vessel disease, or have uncontrolled hypertension because it is a vasoconstrictor and may cause adverse events such as heart attacks or strokes.

An alternative treatment is oxygen. Research and clinical experience indicate that breathing pure oxygen at 12 L/min through a rebreathing mask over the nose and mouth can reduce or stop the pain of cluster headache. The treatment is effective between 70% and 80% of the time, Alan Rapoport, MD, Clinical Professor of Neurology at the David Geffen School of Medicine at the University of California, Los Angeles, told Neurology Reviews. In a double-blind, randomized, placebo-controlled crossover trial, 78% of patients breathing oxygen were pain-free at 15 minutes, compared with 20% of patients breathing air.

Nevertheless, the Department of Health and Human Services (HHS) decided not to reimburse oxygen for Medicaid and Medicare patients, saying that the treatment was experimental and unproven in the Medicare population. A randomized trial of oxygen in older patients with cluster headache might persuade HHS to change its decision, but “it’s extremely difficult to do studies on cluster headache because there are so few people” with the disease, said Dr. Rapoport. “Also, is it ethical to give any cluster patient a placebo, especially those of Medicare age?” To test the treatment in 150 elderly participants with cluster headache would require an international study, and enrollment could take two years, he added. Furthermore, because no pharmaceutical company owns oxygen, the government would be the only likely source of funding for such a study, but “it has no interest in it.”

HHS’s decision is “a terrible mistake,” continued Dr. Rapoport. “The effectiveness of oxygen in cluster headache may not be proven beyond a shadow of a doubt, but if you ask any cluster patient who has used it or any headache specialist, he or she is going to tell you that oxygen works. It does not cost a lot of money to rent an oxygen tank for home use, and it is the safest treatment one can give for cluster headache. The AHDA is just focusing on a ruling that is clearly wrong and trying to get it changed.”

Lawmakers Respond Positively
Lawmakers responded “quite positively, overall,” said Dr. Young. “Everyone’s sense is [that] we were better received overall than in any previous year.”

“Many of the Congressmen and -women do understand and believe in what we’re talking about,” said Dr. Rapoport. “I think we have made some headway.”

 

 

“It is fantastic that patient groups and professional groups like this go to the Hill to educate our Congresspeople about the burden of disease and the need for an increase in NIH funding,” said Dr. Landis. NIH is “committed to raising awareness of the need to increase the NIH budget, which has taken a beating,” she added. “If you correct for inflation and take into account the sequester cut of 5% last year, our funds to spend on biomedical research are less than we had in 2002, which is pretty depressing when you think about the extraordinary opportunities that are available.”

Members of the AHDA would like more headache specialists, patients, and patient advocates to be involved in the group’s activities. “Next year, we will be going to Washington to lobby again, and if anyone is interested in coming to Headache on the Hill, I would like for [him or her] to make me aware of this,” concluded Dr. Young.

—Erik Greb

References

Suggested Reading
Cohen AS, Burns B, Goadsby PJ. High-flow oxygen for treatment of cluster headache: a randomized trial. JAMA. 2009;302(22):2451-2457.

Gillum LA, Gouveia C, Dorsey ER, et al. NIH disease funding levels and burden of disease. PLoS One. 2011 Feb 24;6(2):e16837.

Schwedt TJ, Shapiro RE. Funding of research on headache disorders by the National Institutes of Health. Headache. 2009;49(2):162-169.

Shapiro RE. NIH funding for research on headache disorders: does it matter? Headache. 2007;47(7):993-995.

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WASHINGTON, DC—The Alliance for Headache Disorders Advocacy (AHDA) is talking to legislators to stress the need for more research that ultimately could benefit patients. Members of the organization are following up with 132 lawmakers whom they visited on Capitol Hill on February 11, 2014. Approximately 85 people, including neurologists and advocates for patients with cluster headache and migraine, took part in this annual event known as Headache on the Hill.

The AHDA went to Washington this year with three goals. The first was to ensure that the NIH includes at least three members with expertise in headache on a permanent peer review study section panel that reviews grant proposals for headache research. The second goal was to persuade the Centers for Medicare and Medicaid Services to reimburse patients who receive oxygen as a treatment for cluster headache. The AHDA’s final goal was for the Senate to make research on chronic migraine and postconcussive headache eligible for federal funding from the Congressionally Directed Medical Research Program.

Previous visits to Capitol Hill have resulted in several accomplishments, said William Young, MD, Professor of Neurology at Thomas Jefferson University in Philadelphia and a member of the AHDA’s executive committee. At the group’s urging, NIH began tracking its funding of migraine and headache research, Dr. Young told Neurology Reviews. On five occasions, the AHDA persuaded Congress to include report language in the congressional record that supported increasing NIH funding for research on headache disorders.

Members of the AHDA include professional organizations such as the American Academy of Neurology, the American Headache Society, the Headache Cooperative of New England, and the Headache Cooperative of the Pacific. The AHDA’s membership also includes patient advocacy groups such as Clusterbusters and the National Headache Foundation.

William Young, MDAlan Rapoport, MDStory Landis, PhDLinda Porter, PhD

Increased NIH Funding for Headache Research May Be Inadequate
One of the AHDA’s principal contentions is that the amount of NIH funding spent on headache research is disproportionally small in light of headache disorders’ burden on patients. Members cite the Global Burden of Disease Study 2010, which found that migraine causes 30% of the total disease burden and more than half of the disability burden attributed to neurologic diseases. “While the mission of the NINDS is to seek knowledge ‘to reduce the burden of neurological disease,’ NINDS spent less than 1% of its budget (ie, $15.4 million) on research related to headache disorders in 2013,” Robert Shapiro, MD, PhD, Professor of Neurological Sciences at the University of Vermont in Burlington, and past president of the AHDA, told Neurology Reviews. The total NIH funding for research on headache disorders was $25 million in 2013, which amounted to less than 0.09% of the NIH budget.

Nevertheless, “at a time when the NIH budget has been dropping in real dollars, … there’s been a substantial increase in migraine funding and headache funding,” Story Landis, PhD, Director of NINDS in Bethesda, Maryland, told Neurology Reviews. In 2010, NIH spent $18 million on headache research, compared with $25 million in 2013. “It’s still a very small amount of money,” added Dr. Landis, “but I think there has been a significant increase.”

The 2013 figure “represents a 31.6% rise in funding since 2010, while the total NIH budget was actually cut 6.7% during the same interval,” said Dr. Shapiro. “The increase in headache research funding is encouraging, welcome, and may partly reflect AHDA advocacy efforts, but realistically, NIH funding for migraine research alone would be expected to exceed $250 million annually when compared to the median funding of diseases with similar measured burden,” he added.

NINDS does not allocate specific funds for particular diseases. Instead, the institute invites investigators to submit grant applications, which undergo peer review. NINDS funds grant requests according to the review panels’ determinations about the submissions’ scientific excellence.

“One of the things that we’re finding difficult about increasing our spending for headache research is that the community of researchers in headache is relatively small, [compared with] a lot of the other neurologic disorders that we fund,” Linda Porter, PhD, Program Director of the Extramural Research Program at NINDS, told Neurology Reviews. “With a small community, we get a small number of grant applications.”

To increase the number of grant applications it receives, NIH supports career development programs for junior physician scientists, who are guided by mentors. At scientific meetings about headache and pain, NIH staff host workshops that teach investigators about the institute’s funding mechanisms and how to write and submit a successful grant application. The workshops are intended to explain the NIH process and to encourage investigators to request grants.

 

 

Grant Requests May Not Be Reviewed by Headache Experts
NIH’s Center for Scientific Review examines most grant requests for headache research, but only one of the Center’s study section panels includes a permanent member who is a headache research scientist. The other study section panels maintain open slots for ad hoc members whose expertise is not consistently needed. When a grant application for headache research needs review, the study section panels try to find headache experts to fill these ad hoc slots but do not always succeed. The AHDA is urging NIH to install at least three headache specialists as permanent members of the study section panels so that these grant requests receive “fair peer review,” said Dr. Young.

It has been difficult to find reviewers with headache expertise to join the study section panels, partly because of the size of the community of headache experts, said Dr. Porter. And adding these experts to the panels may be problematic, she continued. Depending on the type of research described in an application, a grant request might be reviewed by a study section that focuses on epidemiology or basic molecular science, for example. “Trying to keep an expert on each one of those panels when those panels don’t get a steady flow of headache research grant [requests] is a difficult thing for the Center for Scientific Review to maintain,” said Dr. Porter.

The NIH is willing to give headache organizations the criteria for serving as a reviewer for the Center for Scientific Review. In turn, the organizations could post the information on their websites, prescreen their members who would like to serve, and forward names to the NIH for consideration. This tactic would “open the communication up a little bit more,” said Dr. Porter.

Neurologists Seek Reimbursement for Oxygen Treatment
Some of the AHDA’s lobbying efforts this year related not to research, but to an effective and safe treatment already available for patients with cluster headache. The only FDA-approved drug for this disease is an injection of sumatriptan. Neurologists may hesitate to prescribe sumatriptan to patients who are 50 or older, have blood vessel disease, or have uncontrolled hypertension because it is a vasoconstrictor and may cause adverse events such as heart attacks or strokes.

An alternative treatment is oxygen. Research and clinical experience indicate that breathing pure oxygen at 12 L/min through a rebreathing mask over the nose and mouth can reduce or stop the pain of cluster headache. The treatment is effective between 70% and 80% of the time, Alan Rapoport, MD, Clinical Professor of Neurology at the David Geffen School of Medicine at the University of California, Los Angeles, told Neurology Reviews. In a double-blind, randomized, placebo-controlled crossover trial, 78% of patients breathing oxygen were pain-free at 15 minutes, compared with 20% of patients breathing air.

Nevertheless, the Department of Health and Human Services (HHS) decided not to reimburse oxygen for Medicaid and Medicare patients, saying that the treatment was experimental and unproven in the Medicare population. A randomized trial of oxygen in older patients with cluster headache might persuade HHS to change its decision, but “it’s extremely difficult to do studies on cluster headache because there are so few people” with the disease, said Dr. Rapoport. “Also, is it ethical to give any cluster patient a placebo, especially those of Medicare age?” To test the treatment in 150 elderly participants with cluster headache would require an international study, and enrollment could take two years, he added. Furthermore, because no pharmaceutical company owns oxygen, the government would be the only likely source of funding for such a study, but “it has no interest in it.”

HHS’s decision is “a terrible mistake,” continued Dr. Rapoport. “The effectiveness of oxygen in cluster headache may not be proven beyond a shadow of a doubt, but if you ask any cluster patient who has used it or any headache specialist, he or she is going to tell you that oxygen works. It does not cost a lot of money to rent an oxygen tank for home use, and it is the safest treatment one can give for cluster headache. The AHDA is just focusing on a ruling that is clearly wrong and trying to get it changed.”

Lawmakers Respond Positively
Lawmakers responded “quite positively, overall,” said Dr. Young. “Everyone’s sense is [that] we were better received overall than in any previous year.”

“Many of the Congressmen and -women do understand and believe in what we’re talking about,” said Dr. Rapoport. “I think we have made some headway.”

 

 

“It is fantastic that patient groups and professional groups like this go to the Hill to educate our Congresspeople about the burden of disease and the need for an increase in NIH funding,” said Dr. Landis. NIH is “committed to raising awareness of the need to increase the NIH budget, which has taken a beating,” she added. “If you correct for inflation and take into account the sequester cut of 5% last year, our funds to spend on biomedical research are less than we had in 2002, which is pretty depressing when you think about the extraordinary opportunities that are available.”

Members of the AHDA would like more headache specialists, patients, and patient advocates to be involved in the group’s activities. “Next year, we will be going to Washington to lobby again, and if anyone is interested in coming to Headache on the Hill, I would like for [him or her] to make me aware of this,” concluded Dr. Young.

—Erik Greb

WASHINGTON, DC—The Alliance for Headache Disorders Advocacy (AHDA) is talking to legislators to stress the need for more research that ultimately could benefit patients. Members of the organization are following up with 132 lawmakers whom they visited on Capitol Hill on February 11, 2014. Approximately 85 people, including neurologists and advocates for patients with cluster headache and migraine, took part in this annual event known as Headache on the Hill.

The AHDA went to Washington this year with three goals. The first was to ensure that the NIH includes at least three members with expertise in headache on a permanent peer review study section panel that reviews grant proposals for headache research. The second goal was to persuade the Centers for Medicare and Medicaid Services to reimburse patients who receive oxygen as a treatment for cluster headache. The AHDA’s final goal was for the Senate to make research on chronic migraine and postconcussive headache eligible for federal funding from the Congressionally Directed Medical Research Program.

Previous visits to Capitol Hill have resulted in several accomplishments, said William Young, MD, Professor of Neurology at Thomas Jefferson University in Philadelphia and a member of the AHDA’s executive committee. At the group’s urging, NIH began tracking its funding of migraine and headache research, Dr. Young told Neurology Reviews. On five occasions, the AHDA persuaded Congress to include report language in the congressional record that supported increasing NIH funding for research on headache disorders.

Members of the AHDA include professional organizations such as the American Academy of Neurology, the American Headache Society, the Headache Cooperative of New England, and the Headache Cooperative of the Pacific. The AHDA’s membership also includes patient advocacy groups such as Clusterbusters and the National Headache Foundation.

William Young, MDAlan Rapoport, MDStory Landis, PhDLinda Porter, PhD

Increased NIH Funding for Headache Research May Be Inadequate
One of the AHDA’s principal contentions is that the amount of NIH funding spent on headache research is disproportionally small in light of headache disorders’ burden on patients. Members cite the Global Burden of Disease Study 2010, which found that migraine causes 30% of the total disease burden and more than half of the disability burden attributed to neurologic diseases. “While the mission of the NINDS is to seek knowledge ‘to reduce the burden of neurological disease,’ NINDS spent less than 1% of its budget (ie, $15.4 million) on research related to headache disorders in 2013,” Robert Shapiro, MD, PhD, Professor of Neurological Sciences at the University of Vermont in Burlington, and past president of the AHDA, told Neurology Reviews. The total NIH funding for research on headache disorders was $25 million in 2013, which amounted to less than 0.09% of the NIH budget.

Nevertheless, “at a time when the NIH budget has been dropping in real dollars, … there’s been a substantial increase in migraine funding and headache funding,” Story Landis, PhD, Director of NINDS in Bethesda, Maryland, told Neurology Reviews. In 2010, NIH spent $18 million on headache research, compared with $25 million in 2013. “It’s still a very small amount of money,” added Dr. Landis, “but I think there has been a significant increase.”

The 2013 figure “represents a 31.6% rise in funding since 2010, while the total NIH budget was actually cut 6.7% during the same interval,” said Dr. Shapiro. “The increase in headache research funding is encouraging, welcome, and may partly reflect AHDA advocacy efforts, but realistically, NIH funding for migraine research alone would be expected to exceed $250 million annually when compared to the median funding of diseases with similar measured burden,” he added.

NINDS does not allocate specific funds for particular diseases. Instead, the institute invites investigators to submit grant applications, which undergo peer review. NINDS funds grant requests according to the review panels’ determinations about the submissions’ scientific excellence.

“One of the things that we’re finding difficult about increasing our spending for headache research is that the community of researchers in headache is relatively small, [compared with] a lot of the other neurologic disorders that we fund,” Linda Porter, PhD, Program Director of the Extramural Research Program at NINDS, told Neurology Reviews. “With a small community, we get a small number of grant applications.”

To increase the number of grant applications it receives, NIH supports career development programs for junior physician scientists, who are guided by mentors. At scientific meetings about headache and pain, NIH staff host workshops that teach investigators about the institute’s funding mechanisms and how to write and submit a successful grant application. The workshops are intended to explain the NIH process and to encourage investigators to request grants.

 

 

Grant Requests May Not Be Reviewed by Headache Experts
NIH’s Center for Scientific Review examines most grant requests for headache research, but only one of the Center’s study section panels includes a permanent member who is a headache research scientist. The other study section panels maintain open slots for ad hoc members whose expertise is not consistently needed. When a grant application for headache research needs review, the study section panels try to find headache experts to fill these ad hoc slots but do not always succeed. The AHDA is urging NIH to install at least three headache specialists as permanent members of the study section panels so that these grant requests receive “fair peer review,” said Dr. Young.

It has been difficult to find reviewers with headache expertise to join the study section panels, partly because of the size of the community of headache experts, said Dr. Porter. And adding these experts to the panels may be problematic, she continued. Depending on the type of research described in an application, a grant request might be reviewed by a study section that focuses on epidemiology or basic molecular science, for example. “Trying to keep an expert on each one of those panels when those panels don’t get a steady flow of headache research grant [requests] is a difficult thing for the Center for Scientific Review to maintain,” said Dr. Porter.

The NIH is willing to give headache organizations the criteria for serving as a reviewer for the Center for Scientific Review. In turn, the organizations could post the information on their websites, prescreen their members who would like to serve, and forward names to the NIH for consideration. This tactic would “open the communication up a little bit more,” said Dr. Porter.

Neurologists Seek Reimbursement for Oxygen Treatment
Some of the AHDA’s lobbying efforts this year related not to research, but to an effective and safe treatment already available for patients with cluster headache. The only FDA-approved drug for this disease is an injection of sumatriptan. Neurologists may hesitate to prescribe sumatriptan to patients who are 50 or older, have blood vessel disease, or have uncontrolled hypertension because it is a vasoconstrictor and may cause adverse events such as heart attacks or strokes.

An alternative treatment is oxygen. Research and clinical experience indicate that breathing pure oxygen at 12 L/min through a rebreathing mask over the nose and mouth can reduce or stop the pain of cluster headache. The treatment is effective between 70% and 80% of the time, Alan Rapoport, MD, Clinical Professor of Neurology at the David Geffen School of Medicine at the University of California, Los Angeles, told Neurology Reviews. In a double-blind, randomized, placebo-controlled crossover trial, 78% of patients breathing oxygen were pain-free at 15 minutes, compared with 20% of patients breathing air.

Nevertheless, the Department of Health and Human Services (HHS) decided not to reimburse oxygen for Medicaid and Medicare patients, saying that the treatment was experimental and unproven in the Medicare population. A randomized trial of oxygen in older patients with cluster headache might persuade HHS to change its decision, but “it’s extremely difficult to do studies on cluster headache because there are so few people” with the disease, said Dr. Rapoport. “Also, is it ethical to give any cluster patient a placebo, especially those of Medicare age?” To test the treatment in 150 elderly participants with cluster headache would require an international study, and enrollment could take two years, he added. Furthermore, because no pharmaceutical company owns oxygen, the government would be the only likely source of funding for such a study, but “it has no interest in it.”

HHS’s decision is “a terrible mistake,” continued Dr. Rapoport. “The effectiveness of oxygen in cluster headache may not be proven beyond a shadow of a doubt, but if you ask any cluster patient who has used it or any headache specialist, he or she is going to tell you that oxygen works. It does not cost a lot of money to rent an oxygen tank for home use, and it is the safest treatment one can give for cluster headache. The AHDA is just focusing on a ruling that is clearly wrong and trying to get it changed.”

Lawmakers Respond Positively
Lawmakers responded “quite positively, overall,” said Dr. Young. “Everyone’s sense is [that] we were better received overall than in any previous year.”

“Many of the Congressmen and -women do understand and believe in what we’re talking about,” said Dr. Rapoport. “I think we have made some headway.”

 

 

“It is fantastic that patient groups and professional groups like this go to the Hill to educate our Congresspeople about the burden of disease and the need for an increase in NIH funding,” said Dr. Landis. NIH is “committed to raising awareness of the need to increase the NIH budget, which has taken a beating,” she added. “If you correct for inflation and take into account the sequester cut of 5% last year, our funds to spend on biomedical research are less than we had in 2002, which is pretty depressing when you think about the extraordinary opportunities that are available.”

Members of the AHDA would like more headache specialists, patients, and patient advocates to be involved in the group’s activities. “Next year, we will be going to Washington to lobby again, and if anyone is interested in coming to Headache on the Hill, I would like for [him or her] to make me aware of this,” concluded Dr. Young.

—Erik Greb

References

Suggested Reading
Cohen AS, Burns B, Goadsby PJ. High-flow oxygen for treatment of cluster headache: a randomized trial. JAMA. 2009;302(22):2451-2457.

Gillum LA, Gouveia C, Dorsey ER, et al. NIH disease funding levels and burden of disease. PLoS One. 2011 Feb 24;6(2):e16837.

Schwedt TJ, Shapiro RE. Funding of research on headache disorders by the National Institutes of Health. Headache. 2009;49(2):162-169.

Shapiro RE. NIH funding for research on headache disorders: does it matter? Headache. 2007;47(7):993-995.

References

Suggested Reading
Cohen AS, Burns B, Goadsby PJ. High-flow oxygen for treatment of cluster headache: a randomized trial. JAMA. 2009;302(22):2451-2457.

Gillum LA, Gouveia C, Dorsey ER, et al. NIH disease funding levels and burden of disease. PLoS One. 2011 Feb 24;6(2):e16837.

Schwedt TJ, Shapiro RE. Funding of research on headache disorders by the National Institutes of Health. Headache. 2009;49(2):162-169.

Shapiro RE. NIH funding for research on headache disorders: does it matter? Headache. 2007;47(7):993-995.

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Neurologists and Patient Groups Seek More Funds for Headache Research
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